So sorry to hear about your new "complications". What are you using in the nebulizer? The reason I ask is you should be using Mucamist, aka Acetylcysteine. It issued for things such as getting the thick goo from around the lungs as well as the entire airway. It then bonds to the DNA and literally converts the mucous to a salt. 3-4 times a day would do wonders for the breathing although it may not feel like it while you are nebulizing. Cough up what you can while doing the nebulizing and after. Have you thought of a consult with a neurological pulmonologist? The main reason I ask is that some of the issues we face relate to neurological/nerve denervation from radiation and surgery to the neck and most doctors don't get it. Sometimes oxygen is good but if your problems are related to nerve or neuromuscular issues, oxygen can force the CO2 down to accumulate to the bottom of the lungs while you feel refreshed from the oxygen and oxygenated blood. An FCV will be done to measure your lung capacity if they have not done one. With breathing issues developing, you might want to check that won't. They also specialize more with what some of us may be dealing with and they understand much more about assistive devices to help your breathing such as an IPPB, cough assist, BPAP for relief breathing or even an ambu bag to help expand the chest from the inside. Second opinions are often good anyway. I was sent to a regular pulmonologist and he said I had diminishing capacity but really just needed to try harder to breath.
Many of us that get the thick goo coming back years later battle trying to find the right doctors because we fall outside of true cancer world. It can coat the airways as well as the digestive track and that is what often kills cystic fibrosis patients. I started coughing up post nasal drip plugs as the constrictors atrophied and choke on them if I lie on my back. When it gets so bad I am coming up a pint a day, I drink a half a bottle of Acetylcysteine, approx 5 ml, and within 12 hours I have some gut wrenching dry heaves with goo pouring out my mouth and nose. It actually clears out my entire digestive track and the result is improved nutrient absorption. Warning, though, drinking it is not for the faint of heart. Isis like rotten eggs. I just pinch my nose and down the hatch. The last one lasted over 2 months as our weather changed to warmer. Doing some nebulizing as we speak and we had a bad storm front roll through Friday and 85% humidity which made it tough with the mountain cedar pollen making the goo flow.
Keep an eye on barometric pressure and relative humidity. Sometimes quick drops in pressure and high humidity make breathing nearly impossible. Others can be affected just the opposite. I hope this helps in some way. Hang In there!
Be well but be vigilant!
Ed
