Re: National Jewish Pulmonary Hospital

[Guest guest]

I went to the University of Washington and not National Jewish but I did get a new diagnosis and a new treatment. I couldn't really afford it either but it was worth it.Beverley Joy,71,PF 1-09, Chronic HP, birds and mold 12-09,Sjogren's,Fibromyalgia IdahoSubject: National Jewish Pulmonary HospitalTo: Breathe-Support Date: Monday, February 1, 2010, 12:29 PM

Hi Everyone,

To any of you that have gone to National Jewish what did you find out there that you didn't find from your hometown doctors? Did they diagnose something new or start your on a new treatment? I am trying to decide if I should go there. I know you all say how well your were treated , but did they really come up with anything new that is going to lengthen your life? I just really don't believe I want to go. I have been so wishy washy trying to decide. I do have insurance, but I know it is going to cost me some out of pocket money too, and I don't have a lot of money.

Thanks a lot ~ hope your can give me some input.

Pat

[Guest guest]

Pat- when I was diagnosed I was diagnosed as IPF- Idiocratic Pulmonary Fibrosis and essentially told to enjoy myself for as long as i could because the average life span was 3 years...under the urging of this group I went to National Jewish and they found out that the local diagnosis was WRONG and I had hypersensitivity to Birds. I had 7 parrots and though I had asked my pulmodude if my birds could have causet this he reassured me over and over that the birds were ok. If I had stayed here and accepted his diagnoses I would have died by now. Jewish had me rehome all my birds and clean my house and do all sorts of things. The scaring has stopped. JoyceRudy AZ birds

[Guest guest]

Joyce Rudy

It wasn't just the misdiagnosis either. Your local pulmonologist also

discouraged you from National Jewish, gave you little information and no

hope. I remember how lost you were and feeling so bad for you and

pushing you and then being shocked when you picked up the phone and

called National Jewish and came back to the forum and told how much

better you felt just from that phone conversation. Sometimes the new

information isn't as dramatically different as in your case, but just

having information you have confidence in and doctors who will sit down

with you and talk and listen is so valuable. I had an appointment

yesterday with an incredible doctor at Duke and just discussing my whole

situation and getting his perspective and having an interchange is so

helpful. Just getting his opinions on certain aspects and things being

done or discussed by my local doctors was useful. I at least feel

everything will be pulled back together into a single plan with all on

the same page after this visit. My rheumatologist might not be that

happy with it all but he's not the most expert in this situation and I

think he'll be relieved to know that his struggles in figuring it out

are common and not of real concern in my situation.

>

> Pat- when I was diagnosed I was diagnosed as IPF- Idiocratic Pulmonary

> Fibrosis and essentially told to enjoy myself for as long as i could

because

> the average life span was 3 years...under the urging of this group I

went to

> National Jewish and they found out that the local diagnosis was WRONG

and I

> had hypersensitivity to Birds. I had 7 parrots and though I had asked

my

> pulmodude if my birds could have causet this he reassured me over and

over

> that the birds were ok. If I had stayed here and accepted his

diagnoses I

> would have died by now. Jewish had me rehome all my birds and clean my

house

> and do all sorts of things. The scaring has stopped. JoyceRudy AZ

birds

>