Re: Here we go again.... now I have UIP/Jerry

[Guest guest]

I hate him so much I could not even be in his presence. I take it to heart when someone almost kills me. He was so angry that I was going to go to Jewish. I think he needs to get out of medicine. I have thought of writing a letter to the Medical board. I couldn't even be around him. Joyce Rudy AZ birds

Re: Here we go again.... now I have UIP

Joyce Rudy, Have you ever unexpectedly gone back to a former pulmonologist who predicted the worst in a short time and presented your smiling, happy self? I have. You would enjoy that!Jerry/Mississippi/54/IPF/dx April 05 > > > > > >> > > > > > What a roller coaster. Originally in 2006, I had a> pulmonologist> > > tell> > > > > me I had ILD, but it wasn't COPD or Sarcoidosis (what does> that> > > leave?).> > > > > That was all he told me. Then I had Best Doctors in Boston> tell me> > > I> > > > > really needed more testing. I found our group and went to> National> > > > > Jewish where I was told I "probably" had cellular NSIP. Only a> > > biopsy> > > > > would prove what I had. The local pathologist hit every> possible> > > > > Pulmonary Fibrosis buzz word in his review of my slides you> can> > > imagine.> > > > > Honeycombing, NSIP like with indications of UIP or IPF. So my> > > > > pulmonologist said he would send it to Denver for a reading> there.> > > He> > > > > changed his mind and sent it to the Mayo Clinic and the> pathologist> > > > > there, Tom Colby. Now I am told I have UIP and the prognosis> is 3> > > > > years. Someone forgot to tell me... I have already outlived> that> > > > > prognosis. Does that mean I am on borrowed time now? Bruce, do> you> > > > > have any insight? My pulmonologist went on to say that none of> the> > > > > clinical trials that he was aware of offered any drugs that he> had> > > any> > > > > confidence in. He went on to tell me that prednisone was not> an> > > option.> > > > > Go figure. I am now back at square one AGAIN. If I go in for> > > another> > > > > biopsy, can I get another reading? LOL What a racket. And,> > > insurance> > > > > doesn't pay squat on oxygen equipment. I am getting a little> less> > > than> > > > > 50% of it paid for. At $600.00 a month, I am going to go broke> in a> > > > > hurry. I guess it would be less expensive to just buy the> equipment> > > and> > > > > leave it at that.> > > > > >> > > > > > Stefani> > > > > > ILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II> > > 2/2006,> > > > > Sleep Apnea 4/2009> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

I understand perfectly. Bruce is right: If a doctor isn't willing and

cooperative about a drvpmf p[omopm. yjrm oy

d yo,r yp ;ppl r;drejrtr/ I can't imagine anyone disagreeing with your wanting

to report this doctor.

Jerry/Mississippi/54/IPF/dx April 05

> > > > > > >

> > > > > > > What a roller coaster. Originally in 2006, I had a

> > pulmonologist

> > > > tell

> > > > > > me I had ILD, but it wasn't COPD or Sarcoidosis (what does

> > that

> > > > leave?).

> > > > > > That was all he told me. Then I had Best Doctors in Boston

> > tell me

> > > > I

> > > > > > really needed more testing. I found our group and went to

> > National

> > > > > > Jewish where I was told I " probably " had cellular NSIP. Only a

> > > > biopsy

> > > > > > would prove what I had. The local pathologist hit every

> > possible

> > > > > > Pulmonary Fibrosis buzz word in his review of my slides you

> > can

> > > > imagine.

> > > > > > Honeycombing, NSIP like with indications of UIP or IPF. So my

> > > > > > pulmonologist said he would send it to Denver for a reading

> > there.

> > > > He

> > > > > > changed his mind and sent it to the Mayo Clinic and the

> > pathologist

> > > > > > there, Tom Colby. Now I am told I have UIP and the prognosis

> > is 3

> > > > > > years. Someone forgot to tell me... I have already outlived

> > that

> > > > > > prognosis. Does that mean I am on borrowed time now? Bruce, do

> > you

> > > > > > have any insight? My pulmonologist went on to say that none of

> > the

> > > > > > clinical trials that he was aware of offered any drugs that he

> > had

> > > > any

> > > > > > confidence in. He went on to tell me that prednisone was not

> > an

> > > > option.

> > > > > > Go figure. I am now back at square one AGAIN. If I go in for

> > > > another

> > > > > > biopsy, can I get another reading? LOL What a racket. And,

> > > > insurance

> > > > > > doesn't pay squat on oxygen equipment. I am getting a little

> > less

> > > > than

> > > > > > 50% of it paid for. At $600.00 a month, I am going to go broke

> > in a

> > > > > > hurry. I guess it would be less expensive to just buy the

> > equipment

> > > > and

> > > > > > leave it at that.

> > > > > > >

> > > > > > > Stefani

> > > > > > > ILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II

> > > > 2/2006,

> > > > > > Sleep Apnea 4/2009

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>