Re: Re: Convenient doctors

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My husband died in March of 08 but I divorced him in 2004. That was a very bad year. I not only got a divorce but my son died in Aug. of 2004. I can't stay up until 2AM. I'm an old lady. I stay up until midnight.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoSubject: Re: Convenient doctorsTo: Breathe-Support Date: Thursday, August 6, 2009, 2:06 AM

Beverly Joy,I understand, I lost my husband in April of 08 and I do miss that. I'm blaming the solar eclipse two weeks ago and tomorrows full moon for all the current pity parties That and the fact its 2 am and I have to work tomorrow and here I am....Dyane Phoenix IPF 02> > > From: Bruce

Moreland <brucemoreland@ gmail.com>> Subject: Convenient doctors> To:> Breathe-Support@ yahoogroups. com> Date: Monday, August 3, 2009, 10:57 AM> > > > > > > > > > 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.phassoci ation.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.>