Convenient doctors

[Guest guest]

Sometimes when you're seeking a convenient doctor with expertise,

depending on where you live, thats just not possible. Joyce Rudy

couldn't find one in her area of Arizona and in fact was being done much

harm by her pulmonologist's ignorance. Going to National Jewish was of

great trouble and expense but she'd tell you today its value. Many of

these means of finding expert pulmonologists will not give those expert

in Pulmonary Fibrosis. However, a good compromise might be finding one

of those for routine help while going to a major ILD center for

diagnosis and treatment. Ideally then they would coordinate with the

local doctor.

I don't have or know of any lists of doctors with PF expertise. I would

ask any doctor how many PF patients does he currently treat and where

did he gather his knowledge of the disease. Those are very fair

questions. The Pulmonary Hypertension Association actually does have a

list of those expert in PH and since they often work closely with PF

doctors, one might look there and ask them for a cohort. I live in the

Dallas area and there are only two doctors here who make their list.

None of them are in the city I live in, Plano.

I use PH as an example because its the information readily available and

a disease many of us may face. Here is their find a doctor tool:

http://www.phassociation.org/Find_A_Doctor/

Unfortunately, there is not an expert PH doctor in West Virginia or

South Dakota or North Dakota or Wyoming or New Mexico or Idaho and many

other states only have one. Regular Cardiologists are not qualified for

PH. Regular Pulmonologists aren't.

The same situation exists with PF. I'm not pointing this out to be an

alarmist, but there are areas of the country you can't find the

expertise you need. If you live in Mississippi, you may have to drive to

Alabama or Louisiana. I drove 900 miles initially for a thorough second

opinion and work up because although there were those with experience in

Texas, they weren't yet a Center of Excellence. I suspect those same

states i listed above that don't have PH doctors may not have

pulmonologists I would trust to diagnose or recommend treatment plans on

PF. Which brings one to a personal decision of choosing a good doctor

not properly trained in PF or traveling. Traveling adds time and

certainly expense. I'd recommend the compromise of local maintenance

under remote expert supervision, but each must make their own choices.

We have a member who lives in GA but chose Duke because at the time

Emory wasn't at current levels. Jack Marshall is in Maine and travels to

Duke. We have those from Mississippi going to Alabama and Joyce Rudy

went from remote Arizona to Denver. MangoMan who keeps us entertained

would love to return to Mexico, but we've lost a member who made a trip

back to Mexico and he recognizes the facts of medical exposure and risks

enough to realize its not the best place to live with PF.

Mostly, we don't choose where we live based on medical needs but other

factors led to it long ago. However, two years ago I was contemplating

where to live and my medical needs were an overriding part of that

decision and that was before the PF diagnosis. I feel for those who

can't move and can't get what they need locally. However, I don't want

us to overlook the fact that some locations just don't have doctors

expert in PF. As important as research may be and as national attention

may be, one thing that is sorely lacking is training within the

Pulmonology profession in Pulmonary Fibrosis. I'm sorry the answers

aren't as we wish when some look for medical expertise in their area. I

would personally do anything I could to get to the best I could find,

but that may not be possible for some nor the choice others feel is

right for them. I do suggest one thing though to those saying they can't

travel the distance. Reread Joyce Rudy's story. She sacrificed the birds

she loved, made the trips by herself at great expense, and had to beg

friends to take care of her dogs. She went against the recommendation of

her local pulmonologist and made the trip. I remember her lost and

frustrated. Now I see her upbeat and off to her exercise program. Likely

her life has been lengthened. No doubt the quality improved and not just

from a physical standpoint. Even more from a comfort and control

standpoint.