All late diagnosed CFers had to work within the means of regular doctors. My CF issues seem to have taken turns at being critical to manage. Little difference in treatment is available for most CF issues, malnutrition being one exception since it is rarely suspected. My ENT does ENT jobs, my exocrine GI doctor takes care of part and my CFGI doctor includes some endocrine issues like the pancreas. He is such a rare resource that I use a regular GI doctor for "IBS" and GERD. I have an endochrinologist, neurologist, GP/pain management and a psychiatrist from time to time. I also see a CF specialist although he is a pulmonologist first so he oversees all of my CF issues but treats my pulmonary issues.
I didn't start out this way, but I have a wider variety of doctors to choose from, especially since I can pick and choose the ones I want. CF centers are the most comprehensive places to treat everything CF. To compare, I went to the Mayo Clinic when my CF issues were finally colliding and they totally missed it. Two months later a pancreatic specialist associated with BIDC in Boston handed me a diagnosis of CF. The Mayo doctors weren't stupid, but they are trying to reduce all the ailments known to man down to a diagnosis. The idea with a CF clinic is the assumption your doctors periodically get together and discuss their patients. Doctors may take courses on how to work and play well with each other, but most are not wired for cooperation.
I enlist my doctors to talk with each other, in fact if they can't, I find another one who will. This is my first test of a doctor, my ENT knows about the infections and damage in my ears, nose etc. and my CF specialist knows about my lungs if they can't communicate, I may be swapping lung and sinus infections needlessly.
My ENT was checking out my swallowing and found it dysfunctional. Not seeing damage from inhalants or a G tube, he ordered a swallow function test and told me to see a neurologist. Before I left, he had me sign about every HIPA release I could for all my doctors, in particular my GI doctor. As he followed up with my pulmonologist and GI doctor, I saw a rather astonished neurologist. Parkinson's was diagnosed, my GERD was better controlled and my four annual hospitalizations for pneumonia stopped. I can't count the number of times I had pneumonia, especially in the previous decade. This is doctors cooperating.
In a way, it doesn't matter if you are being cared for at a CF clinic or not, but CF is a complex disease that requires your CF team to exchange information. I give them no choice. When I see one doctor, if any tests are ordered, every doctor gets copied, and I follow up to make certain they all have seen the information or know of a change in my treatment protocol. I could almost walk to one of the best CF centers in the U.S. and I use them as part but not all of my medical management. A constant bottleneck seems to be CFGI specialists, and man do we need them. The CF center where I live has a hard time getting and keeping dedicated adult CFGI doctors. It seems as soon as they get a GI department up and going, they are immediately overwhelmed and appointments get stretched out beyond reason. I can't fault this from happening, but it underscores how difficult it is to get all the CF+____(insert specialty) doctors under one roof and on the same page.
It is nearly impossible for any one doctor to diagnose CF although it usually comes down to one observant doctor suspecting it. If any medical condition parallels the story of the blind men describing an elephant CF is it. One feels its tail and declares it's like a snake while another feels its leg and compares it to a tree and so on. Sinusitis, respiratory infections to ravaged lungs, gastritis, GERD, PSC, IBS and a host of semi-this or that symptoms won't add up to an effective CF diagnosis if each problem is treated in a vacuum.
Best of luck getting your CF team together again,
LL
