Keely,
I agree with the above post from jdmd about ABPA. The only time in my life when my PFTs took a severe dive was a result of ABPA - which I hadn't even heard of before then. Aspergillis is the mold that grows on any kind of rotting vegetation. It's the mold you'll see on onions; it's the mold that is rampant in all gardens, especially those with organic mulch or compost. It is in part what makes compost compost. Living in Ireland you are clearly at a disadvantage - with a humid environment and I would imagine lots of vegetation.
Anyway, eight years ago my PFTs, which were regularly in the high 80s/ low 90s, suddenly plummeted to the 50s and I was highly short of breath, really for the first time in my life. My pseudomonas A levels had also skyrockted so I was hospitalized and treated with IV antibiotics for the pseudo. Just as I was about to be released after two weeks a young doctor thought to do an IgE blood test and it came back very high. So ABPA was the primary infection, but was not being treated (ABPA requires anti-virals, not antibiotics) while the Pseudo was a secondary infection taking advantage of my lungs already compromised state. Pseudo is like a mugger that only attacks old ladies - once your lungs are compromised by something else then the Pseudo will attack and multiply. Oftentimes something else, like ABPA is the primary infection. Not all doctors catch this. I was released from the hospital with oral anti-virals and the infection cleared up within a couple of weeks.
Have you ever tried laying down or napping with your vest? It can be very relaxing. Put the vest on first and lie down, then attach the tubes and turn the unit on (this is so the backside of the vest doesn't fully fill up, which is uncomfortable when you are lying down). If you're at all sleepy you can set the vest for a full hour and you may actually fall asleep. I also listen to my ipod while doing this quiet soothing music can help you fall asleep. I find that I will oftentimes not cough as much while I'm laying down, but will really clear out a lot of mucus once I get up. I also use the vest while pedaling a stationary bicycle. Get creative and see what works for you.
My pulmonary team has pointed out that if I cough so much that I can't even use the vest, that indicates just how much I NEED to use it. I know it can be painful, all that coughing, but it is actually very good exercise for your lungs and diaphram. When you have cf coughing is good. It's a nuisance, but it's good.
It's also true however that if you have some underlying infection that is causing this you could spend 24 hours a day in the vest and doing nebs and it's not going to solve the root problem. You've got to find out what has caused the rapid drop in your PFTs. And if your current doctor isn't being helpful then you need to interview some new doctors. Trust me, at 45 I have long-since learned that YOU have to be your own advocate for your health. Nobody else is going to do it for you - not even the doctors who we trust so much to look out for our best interests.
Keep us informed of your progress. If you want to email me directly you can at david@sholes.org. You can also find me on facebook: David Bardon Sholes
Best,
David Sholes
Bennington, Vermont
