Well here we go again !!!!!!!!!


New member
I just read an article on the computer about, "The five most mis-diagnosed diseases" well as always not a word about CF. I guess CF must be #6. WHY is society so affraid to bring CF to the front page. So when we go to our PCP's they can treat us with a small amount of knowledge. I am having a terrible time with my new PCP, my insurance requires a referral to see my CF Drs. Well of course through out my exam to get my referral my PCP is finding all these things wrong that are related to CF. But I can not convince my PCP that it is nothing to worry about it is just one of the manifestations of CF. OMG I am having a terrible time. Constant blood draws, constant "ultra-sounds" constant "CT scans" Finally told my PCP that I told my CF Drs. what I am going through, I told my PCP they are laughing at you, because you won't listen to me..... So here I go looking for another PCP, I had maybe 4 visits with this one before making them mad to the point they don't want to treat me... CF is so terrible, hardly anyone in the general medical community knows how to deal with us with CF...........Scorp


New member
Good idea except...

My Cf Drs. are 2 1/2 hrs. away and are not at all familiar with my area.(B)


Super Moderator

Welcome to a community who can relate to your issues. Like all uncommon medical conditions, especially a genetic disease like CF it is hit or miss. It still astounds me to see nearly all the CF patients on this site that were diagnosed at birth. There is a vague line about age thirty where late diagnosis starts to cross over from those caught at or near birth.

I have followed your enthusiastic posts. I know the feeling when after a lifetime of staring at doctor after doctor to find a whole community of people diagnosed with CF. I get the supreme insult of being asked by a doctor when you caught CF? In a way, that seems to be the eye of your storm. It is tiring to be played like a pinball that never scores and never leaves the bumpers. Medical merry-go-rounds and the cycles of the insurance companies, government benefits, doctor after doctor, until you need a doctor just to deal with dealing with the disease is too much.

It isn’t any easier for the rest of us. Just by virtue of your mention of insurance puts you in a privileged class already. If screwing with insurance’s criminal obfuscations is a hassle, try life without it at all. I am even more privileged because my insurance is pretty high end. I can see any doctor in the U.S. without a referral from anybody. Even at that, unless you are cloistered in a total treatment center, doctors aren’t known for working and playing well together. It took years to assemble doctors in each specialty that committed to an occasional conference evaluation. Now my PCP and my CFGI doctors are about to retire. I have been scrambling for a year to find such a team.

CFers all rail against the medical management to some degree. Doctors often see their roles as ongoing. They know they aren’t going anywhere and to that end, they watch and monitor you. Most doctors still subscribe to the idea that volunteering information most often is not going to aid the patient. I rail at this condescendence and have learned how to use doctors to manage my condition rather than the other way around.

The job never ends. You have been angry over the seemingly over paid and under qualified doctors. CF is a losing proposition if you are looking for one stop shopping, especially as an adult. Be assured, you may be seething over your last idiot doctor but he/she forgot you before the office door closed. Practicing medicine isn’t what any doctor expected it would be. Although the average PCP is low on the pay scale, they are the ultimate practitioners. They may send you here or there because this is what medicine has become. If you get a doctor who is laughing at you, then get mad. The job is just too hard to deal with patients who unduly whine about the quality of their treatment. I am no more happy to be in a market where a doctor can pick and choose their patients but I have learned to avoid a bad reputation as a patient. You have every right to be angry and frustrated with our medical system. I know you can figure this out for yourself but if networking backwards to a PCP like Printer advised, it beats having to clear so much black bile.



New member
Thanks, Printer and Little...

I will gladly try your recommendations. I am just so frustrated.... It makes me want to forget about ALL Drs. altogether, and live my life Dr. free, as I did from the age of 16y.o. until the age of 45. The only time I saw a Dr. during that period was once when I wrecked my motorcycle (in high speed crash) and the other was when a car fell on me and crushed my shoulders. CF has not killed me, the previous mentioned incidents, did not slow me down,,, but these Drs. are taring me apart..... Thanks so much for your input I really do appreciate it, and I will try it and see what happens.... Thanks again.........Scorp:)


New member
I am truly sorry to hear about the challenges you're facing in obtaining proper care for your CF. It's frustrating that CF often doesn't receive the attention it deserves. Finding a knowledgeable and understanding PCP is crucial. Keep advocating for yourself, and don't hesitate to seek out a healthcare provider who is better equipped to support you on your CF journey. You deserve the best care possible.