Alyssa makes some excellent points. I guess when Lex said he had asthma and his doctor is recommending a lung transplant, I assumed his doctor would have been treating his asthma. The very least with asthma meds. I was really amazed to read that, but I shouldn't be -- since I have had doctors with similar attitudes.
My first pulmonologist also didn't treat my asthma component. My next doctor gave me a couple of meds, but he said asthma wasn't my problem either. And I just got worse and worse. My current doctor is the one that treated me for asthma and with meds and what she calls protective measures (which I've talked about here and other posts) and my entire life changed.
Regarding Nu65's post, I saw that your numbers went up a little. With compliance and some environmental changes, is there is room for more improvement? For me, bronchodilators and meds which are essential, they alone wouldn't be enough. With asthma, the more I controlled, the better I got.
And if anyone has asthma, at least there may be room for improvement. An example: When I was at the doctor the other day, she told me about a a fairly new patient who called 911 every week because she couldn't breathe. At the hospital, they gave her steroids and she'd go home and feel okay for a week until the steroids wore off, then it would happen all over again. Rushed to the E.R.
My doctor tested the woman for allergies and couldn't find the trigger for her problems. (Allergy tests do not test for everything in the universe.) It didn't seem like there were any changes in the woman's home or workplace...until her husband mentioned they bought a new mattress months before. Bingo! Mattresses have fire retardant and can trigger asthma. The woman got a new mattress without the retardant and the attacks stopped.
In other words, there are so many things that can contribute to hastening the decline in lung function. This woman had chemical sensivities which a lot of us have. But there is no test for that. And most of the time, it's not going to be just one thing that affects you. It's going to be lots of things and these irritants create inflammation which cause exacerbations and infections.
The point I am trying to make is -- if our doctors are not looking at the asthma component, or even whether you have an asthma component, maybe you should press your doctors to investigate this. And by the way, it is not disloyal to get a second opinion. It's your life. And your health.
And lastly, you can't strictly look at the PFT's and say that unless you have a 25% improvement after a bronchodilator, nothing can help you. Eleven years ago, when I was tested by my new doctor, my post albuterol numbers were only 11% better. But my FEV1 went from about 37% to the low 50's in a year or two -- when ordinarily, it would have declined. Plus the improvement was visible in my CT scans. The PFTs aren't completely foretelling because when the albuterol has propellant in the inhalers which is an irritant. Plus for me, doing the PFT's, my asthma sometimes kicks in, because blowing so hard starts to constrict my lungs.
I think a lot of people are wondering if their CF has an asthma component. I think every path is worth investigating.
