Any disease or condition find the best

[Guest guest]

This isn't just a statement regarding PF. If you're diagnosed with any

serious disease or condition, find the most expert doctors you can find

in that specific disease. The reality is the less common the disease,

the more difficult this is. The majority of pulmonologists in the

country lack expertise in Pulmonary Fibrosis. The majority of

Cardiologists lack expertise in Pulmonary Hypertension. My ex mother in

law recently was considering alcohol ablation for a heart condition.

There are two doctors in the state of Texas who perform the procedure.

That's all. Doctors are not expert in those conditions they aren't

familiar with on a regular basis. Thats why you have general surgeons

versus thoracic. They consider the need to concentrate on certain areas

of the body. Orthopedics is a prime example. The typical orthopedic

practice now has a doctor who just does shoulders or arms and shoulders

versus another who specializes in knees.

Most of us just were conditioned to accept and trust advice from

doctors. Well, I've seen more poor advice and absolutely wrong advice

given for PF'ers by general practitioners and by pulmonologists who

don't specialize in PF. Same with nurses and respiratory techs and

oxygen suppliers. The vast majority of their patients are COPD'ers and

they don't give proper respect to the huge differences. I'm sure many of

you have experienced a doctor being panicked over a condition or lab and

sending you to an expert who wasn't concerned. I have examples. My

kidneys are one. A GP or my rheumatologist thinks I should be very

concerned because my function is 40%. To a Nephrologist that isn't a

level to panic but just monitor. Meanwhile a GP might treat acid reflux

lightly while a Gastroenterologist understands the real risk and danger.

My muscle enzymes are very elevated versus a normal person, but compared

to someone with high levels due to Polymyositis they are nothing.

> > >

> > > E-mail from my pulmonary specialist:

> > > Group Health usually does not provide oximeters. We try to keep

> > > saturation above 90%, but it is hard to show ill effects until it

> > falls

> > > below 85% for a significant period of time (hours per day for

extended

> > > periods) The saturation, however, is just one measure, and needs

to be

> > > evaluated in light of heart rate and other organ function. ROBERT

> > > SANDBLOM, MD

> > > C_53_IPF_5/09

> > > Washington-the-Evergreen-state

> > >

> >

>