Re: New Pulmo-Dude- Survival Rate

[Guest guest]

Joanne,

This doctor is nuts. His survival rate is absurd. I just had my VATS and the

preliminary pathologist report is saying UIP. My pulmonologist does not think

he is correct because of the larger picture, ie. cat scans, PFT's, symtoms, ect.

So I am waiting for my doctor, (Dr. Glassberg at University of Miami), to

discuss with the pathologist.

Anyway, after this news I have been on the internet for three staight day

looking at everything I coulp find on UIP.

Attached is a study that was done that shows an average survival rate of 6.5

years (78 months). This study also reports survial rates from other studies as

well, that are not as opptimistic. Its findings also report average survial

rate of 178 months for NSIP.

http://www.erj.ersjournals.com/cgi/content/full/19/6/1114

Check out the study above.

Thanks, Dave

>

> Yesterday I had my first appt. with Dr. Lovy, who is the Dr. of Sciba,

another member. I was really impressed.

>

> Before I go on I would like to thank every one of you for the things I have

learned from this board. I am always telling everyone of the things I learned

here, Dr., friends, relatives, and even strangers. I have learned what to ask

Drs. for, what to expect from this horrible disease, even getting on o2 because

of all of you.

>

> I am a lurker, I read posts everyday. Sometimes three or four times a day. I

am always reading. I just don't feel comfortable posting. I have posted when I

have questions for all of you. and I really appreciate the answers, I just don't

follow through and keep posting. I'm sorry. I still love you all.

>

> Anyway back to my appt. Dr. Lovy was surprised by the lack of tests that I

had done by my last Dr. I had already fired my local Pulmodude in April. Last

year I had asked to be sent to U of Michigan (which is a Center of Excellance).

I went there, had different blood tests done, but that was it, now my Dr. there

has left and gone to a different facility so I am being assigned to another

Dr.,which I haven't seen yet.

> The new Dr. I went to is in my hometown. I was really impressed when I made

my appt. The person making appts knew all about PF, so maybe my dr will be

preeety good. Dr. Lovy was surprised that I haven't had a CT scan done since I

was dx 2 years ago. I am scheduled for one on Nov 30 and also PFT's. I go back

to see him on Dec. 21. He also said I should be using o2 at night, remember I

questioned that back in July when I first when on o2. My dr then said I didn't

need it, I also have sleep apnes and use a cpap machine. Dr. Lovy is calling my

o2 company and getting that set up for me.

> I had a VATS in 07 and was told I had UIP Dr. Lovy said that can't be right

because he said that most people with UIP only live 6 months. I went back

through posts and see that alot of us have UIP and are still alive long after 6

months, I know we don't have expireation dates on our butts. Why would he say

this? My daughter was with me now she thinks I am going to die soon. Dr. Lovy

wants me to have another biopsy done but this time just down my throat with the

tube. I thought that this kind couldn't get enough tissue to make a diagnosis?

Please help. Dr. Lovy is also going to set me up for Pulmonary Rehab again

because he doesn't think my last one did it right.

> I'm really sorry this is soo long. I will close for now and ask more later

> JoAnn 53 MI UIP 9/07

>