Dear fellow participants, my daughter with CF who is 11 years old is struggling to fall asleep these days. She is huffing and coughing so hard trying to clear her chest but can’t get it up. We try percussions and breathing techniques and only small bits come up. Any ideas?
When DS seems to have issues, we increase chest physiotherapy (cpt). We normally do 3 breathing and vest/cpt treatments a day, but will increase to 4-5 if need be. We also will focus manual cpt/percussions on the areas that area affected. His breathing treatments also include dnase/pulmozyme once a day to break down mucus and he recently started nebulizing hypertonic saline. If he feels as if he has a plug or something stuck, we have him huff cough and increase his fluid intake -- drink more water. He also tends to have more sinus issues, so if he gets a head cold and mucus runs down his throat all the time, we have him do sinus rinses.
Seems like she's doing the right things. When she huffs: take a deep breath and hold several seconds if possible. She may already know this. Obviously bronchodilators can help.
Another note, I've recently been put on nebulized sodium bicarbonate, apparently changing the pH environment helps thin mucus and slow bacterial proliferation. It's a newer treatment and I had trouble even getting CF pharmacies to stock it.
I do something called an IPV. Or intrapulmonary percussive ventilation. It is an old school treatment. I had 3 different vests, they never made me cough anything up. I cough up so much now. I have been doing it for 7 years. I had a 15% lung function increase 3 months after starting. It is a little tricky to do and she may be too young but I thought I would mention it. The Dr. who invented the machine created it for his wife who had cf, many years ago. It shoots air and regular saline and or albuterol into your lungs and percusses from the inside out. You breathe against the pressure.
Kenna: It's just called Sodium Bicarbonate. It comes in 5ml vials and you need syringes to extract. Hasn't gone the route where there are mass produced ampules yet. Yes I have noticed a difference, probably a few % FEV1 gain but I feel like my coughing symptoms have reduced.
Regarding IPV, I tried it a couple times over the years. I recall it getting a little messy with solution leaking and a little exhausting using it. Maybe that's a good thing. I like the concept but it seems odd nobody's upgraded the design in 30 years.
Something that my parents did was straight out of "Cider House Rules". The orphanage had a sickly boy, presumably from alcohol use by the parents, or something else that wasn't well understood in the 1940's. My father could make anything, although he was loathe to admit it. During a particularly bad spell for my lungs, I awoke inside a clear plastic tent, filled with steam so thick I couldn't see out. Humidity where I grew up wasn't so much percentage of water as much as a percentage chance there would be ANY measurable moisture in the air. Actually the humidity was typically around 5%, something verified by everybody's bone dry nasal mucus. In my case, the oxygen tent was hooked up for both steam and oxygen. Fortunately for me, my lungs improved considerably by the time I was an adult.
Water in the form of extra hydration usually translates to a better quality of life all around when it comes to CF. I don't like salt and I don't really like drinking water which doesn't help when I am sick. Once I get into the routine of good hydration I drink a gallon a day of water and non dehydrating liquids. Doctors don't hold our hands and to my surprise, they don't bother harping on simple things we know help. Doctors tend to be delighted when a test comes out negative, usually for good reasons. We don't want bad news and there's a disconnect when they find nothing wrong, and we are certain there is. We don't want to hear that we need new lungs or something life changing, but we want answers when we feel something isn't right.
Something so obvious I forgot the answer to a particular health issue could be "you have CF". CF is still just treating the health issues that arise from our tiny genetic error.