He has a point, though. I think maybe some of it got lost in translation, because English is obviously not his first language. While I do think CF is a legitimate disease, it's also a HUGE business. As are AIDS, cancer, heart disease and more recently, psychological problems. I read a statistic recently ( the numbers I can't remember), but there are a staggering number of Americans on psychotropic meds (SSRI's TCA's MAOI's atypicals). I know personally they tried me on lots of those meds when I began having insomnia and they either made it worse or didn't do anything at all. Pharmaceutical companies are now marketing to the patients. Years ago they spoke with the docs, now you can't watch TV for 15 minutes without seeing a commercial for a medication and be prompted to ask your doctor about prescribing it. You bet your ass it's a business. The point he was trying to make, I think, is that it's ridiculous the amount of time spent in clinics and medications that CFers are required to take. Me for example, 70 miles to the nearest clinic at $4.00/gallon of gasoline. Copays between $5-$30 for medications and $20 for specialist visits. And it's getting worse now that the CF docs are farming out everything that isn't pulmonary. Now I have a sleep specialist, an ENT surgeon, an orthopedist and my PCP, all with their own copays and all the same 70 miles (with the exception of my PCP, which is 30) away. I cut waaay down on the medications that I take. Basically I cut everything but the enzymes and my sleep meds (valium). I have inhalers that I use if needed, which rarely happens. I also use Flonase in allergy season. That's it. I also cut my clinic time, I go to clinic about once a year. The strange thing is that after cutting out a lot of the medications, my health improved. My PFT's went up, my weight went up. Also, when I switched to Creon, I cut the dose drastically. I realize that there's 400 extra units of Lipase, but I went from 8-10 Zenpep 20 to 3 Creon 24's, with no ill effects. Obviously, I didn't need all the medications they were giving me (I think at one point I was up to 10 different meds). It was nothing to spend close to $200/month for just Rx copays. Here's my problem with this forum. When that thread came up, everyone got their knickers in a twist and flamed the crap out of that poor guy. To the point of him leaving the site. Leave your bloody emotions at the door. Did anyone think to direct him to some literature that explained CF, especially something in his first language? Maybe the doc he took his daughter to did a horrible job at explaining things, maybe he wasn't even a CF doc. Many of the people that flamed on that thread are the same people I've seen preach "this is a support site" on other threads. If that guy is in denial, or if he's just overwhelmed at the cost of caring for a child with CF, you failed miserably at trying to offer him support. Of course, since he is no longer here, we won't know. I find it ridiculous that a person would respond that way because they were offended. What a load of sh*t. Are you really so sensitive? A lot of you really need to develop a brain/mouth filter and keep posts relevant and supported by facts. Unless of course someone asks for some kind of emotional response. I want you all to think really hard about what you said and think about how much your venomous words might cost his daughter. A story I think is appropriate here comes from a woman who was incarcerated in Auschwitz. Her family was taken there and on the train and she noticed her brother did not have his shoes on. She said to him "how could you be so stupid and not wear your shoes." She was the only one to survive the concentration camp and had to live the rest of her life knowing that the last thing she said to her brother was admonishment. When she was set free, she vowed never to say anything that couldn't stand for the last thing she ever said to somebody. I think we should all try to live up to that standard.
