Re: Re Patti

[Guest guest]

Patti

One of the things I was most impressed by when I first saw Dr. Strek was

how thoroughly she had been through the records submitted and my life

and medical history. And, my stack of records was massive. But the kind

of things they are looking for are things just as in your case. It's

also notable that they aren't rushing to do the VATS until determining

in their mind that it's really necessary.

I'm glad your experience was good and I think regardless of what they

ultimately determine or steps they recommend, at least you'll have the

comfort that they are expert and covering all bases. In some situations,

I get quite upset with doctors who don't run on schedule very well. But

then when you sit down with your family and talk to a doctor like Dr.

Strek, you quickly realize why she's behind-that she ran over with

someone else who needed more time than scheduled.

>

> Good Morning Friends,

>

> Well I spent 5 1/2 hours at the University of Chicago yesterday. Yes,

they were running way behind schedule but didn't rush at all when they

finally got to me. They were not at all upset that I brought my husband

and two daughters with me. They immediately brought in more chairs.

>

> I got both encouraging news and some not so much!

>

> I am so glad I decided to go to a teaching hospital because Dr. Strek

is insistent that she is not yet willing to throw in the towel and

commit to a diagnosis of Idiopathic Pulmonary Fibrosis. Yes, all my

scans show I do have PF and my PFT stats are dropping but the 22 tubes

of blood they took were all negative, so no auto-immune problems. I did

find out something very interesting. Throughout my entire adult life I

have always had a lot of bladder infections, and I was always treated

with a prescription called Macodantin or Macrobid (generic name

Nitrofurin). Well this is a dangerous drug and can cause PF. She wants

me to go back in my history as far I can find records and try to find

out how often I took this medication. I actually just had a bladder

infection and had taken this medication just a week ago. Can you

believe that!! Needless to say, she said never ever take this

medication again. I am to return in Feb and repeat the PFT's and see if

the scores have gone up or remained the same. If they have gone down

again as they have in the last two years and even the past 2 months,

then she suggests the VATS biopsy at U of Chicago. She will have to look

further as I am still basically asymptomatic yet all my scores are

really very low. My diffuse score was 34. She said my heart must be

very strong as I do not yet require oxygen nor do I have much trouble

being out of breath.

>

> I do still have PF but I left not yet being prescribed oxygen or

Prednisone so I thank the dear Lord for that blessing.

>

> Patti, 59, Indianapolis, IPF 2007

>

[Guest guest]

We are so lucky to be near a teaching hospital. There is one right here in Portland OR, about 15 miles from me but they are out of network for my ins.

I am changing from Blue Cross Blue Shield, Med Advantage to Health Net this year and THEY do cover OHSU (Oregon Health Sciences University). However, I think I will stay with Dr Raghu in Seattle now. A 3 hr. drive is worth it to me now.

From: Patti

Sent: Thursday, December 17, 2009 11:46 AM

To: Breathe-Support

Subject: Re: Re Patti

Sher,

Happy Holidays to you too and yes I am glad I did go forth and seek another opinion at a teaching hospital. While I still may end up with a diagnosis of IPF at least I will know I have done whatever I could to get an accurate evaluation.

Patti, Indianapolis, IPF 2007

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