Tuesday, December 14, 2010

Finding the Right Doctor

In the CF world, we are lucky to have doctors who specialize in the disease.  They know the disease inside and out. I feel nothing but confidence in my current clinic and the care and advise I get from the team.  However, there is one aspect of the disease that clinic is not equip to handle and that is these ugly sinuses.  Once the infection is manifested in the sinus cavities, there is no option but to see an Ears, Nose, and Throat (ENT) doctor.  While ENT in them self are specialists, they usually don't seem to truly understand the special needs of a patient with CF. At least that has been my experience. 

As I continue to struggle with sinus symptoms, I expressed concern to my CF clinic about being under the care of an ENT who doesn't consider the factors of CF.  She referred me to an ENT who cares for most CF patients in my clinic, Dr. C. The main problem is Dr. C's office is about 60 miles from my house and he is really hard to get an appointment with.  However, if he is the best doctor for me to see, I will drive across the country if I have too.  I have seen Dr. C once.  He was dry (most surgeons are) but I thought he had good ideas.

I have a follow up appointment with him in January.  I thought it might be a good idea to get a culture of my sinuses and have the results available for my appointment.  He agreed and referred me to a local ENT to have the sample collected.  This doctor was very friendly and able to see me the same day.  We talked a little bit about my history. He made a few comments to me that made me question is ability to manage care for a CF patient. 

First, he advised me to use sudafed as a form of pain management.  Hello, if something as simple as sudafed was all I needed to manage my sinuses, I wouldn't need to see an ENT.  I have a very complicated case of sinusitis that requires something way more aggressive that sudafed.  Next.

Second, he informed me that I do not have a sinus infection, because I don't have gobs and gobs of green stuff dripping from my nose.  Are you kidding me?  Does this doctor not know anything about CF?  I don't have anything dripping from my nose because it is all stuck deep in my sinus cavities.  Symptoms of an infection for me are going to be very different from the average person.  Jeez.

Third, I really got nervous when he questioned why I would go on IV antibiotics for a sinus infection.  IT'S THAT BAD! Don't you get it?

The doctor then collected the sample (which was the sole purpose of my visit) and offered to take over management of my care.  He claimed that doctors refer their hardest cases to him and he is more than qualified to manage my case.  I seriously doubt that, although I didn't say that to him.  I didn't know what to say, I guess I should of just told him the truth.  But this is what scares me about this problem...will I ever find an ENT who gets it?  Who really understands?  That will take an aggressive approach to my care? I am looking for aggressive care.  Back to Dr. C in January, I am very hopeful he is the right doctor for me.


  1. What an interesting post, Colleen! I know what you mean. It amazes me how many drs know NOTHING of CF. Sounds like that dr. wasn't too sharp. I'd continue with Dr. C, even if he is further away and not Mr. Personality.

    My ENT doesn't work with many CF patients, but does work with a lot of cancer patients. He seems to really be on top of his game and doesn't recommend anything weird. I feel like we only have a few choices with our sinuses. Irrigating, abx, surgery. Other than pain mgtmnt, that is. My last surgery he grew a culture and it was PA - that tends to me what grows.

    I smiled at your sarcasm. :)

  2. I finally have a great ENT who works with CF patients and she is wonderful!! I've had probably about 6 of them in the past that really didn't get it either! Good luck with Dr. C!!!

  3. Hope its right. Sudafed dries out the mucus which is so bad. My ent sees cfers pre and post so im lucky