Re: VATS Biopsy results

[Guest guest]

StefaniThe words are often used indiscrimately so I'll try to explain best as I can.These diseases all fit under a heading called Interstitial Lung Diseases. Using Mayo's definition:Interstitial (in-tur-STISH-ul) lung disease actually describes a group

of disorders, most of which cause progressive scarring of lung tissue.

This eventually affects your ability to breathe and get enough oxygen

into your bloodstream. Beyond this, the disorders vary greatly.So, since the vast majority of these cause scarring, they are then typically called Pulmonary Fibrosis. Now, it gets a bit more complex as there are over 200 varieties identified so far. UIP and NSIP are two. These terms are pathological diagnoses. That is they are based on specific identifying features seen on CT or biopsy. They all have distinguishing characteristics. They are not based on clinical findings or observations. This brings us to Idiopathic Pulmonary Fibrosis. It is a clinical diagnosis. It is UIP when the cause is unknown. Now, this is the medical definition. (Although seems logical to call any Pulmonary Fibrosis of unknown cause IPF thats not technically correct). Now, unfortunately these definitions aren't widely adhered to in conversation. So many people will say IPF when its PF but not IPF. It only matters when trying to understand the exact disease and course and possible treatments.>> I went to my pulmo-dude today and got the biopsy results. Kind of curious. National Jewish "diagnosed" cellular NSIP. according to review here in Salt Lake, the biopsies indicated UIP-type nonidopathic. The reviewer went on to state that there was variable fibrosis, somewhat mild in nature with a tendency towards peripheral localization, along with peripheral honeycombing. My doctor sounded almost perplexed. As am I. Sounds like I do, but don't have anything... Wierd. My pulmo-dude is sending the slides along with a cover letter to National Jewish for them to review... because the knowledge and experience with PF is just not that strong here in Salt Lake City. I have sent an email to my National Jewish Health Center doctor (Dr. Fernandez), giving him a heads up. I also asked him to let me know if he needs insurance information for billing purposes. > > Also met with local group. I ended up being a "featured speaker" because of what I am doing for PF Awareness week. I bought wrist bands from the pulmonary fibrosis foundation for family and friends with instructions on how to answer questions during awareness week. I am also having them ask their friends to call the congressional representatives to get HR 1079 approved. I shared the blue shirt Friday idea with them as well. Several people expressed interest in the online support group so I told them they would have to be "approved" but to go online and apply. > > These people are primarily IPF, Ideopathic Pulmonary Fibrosis, patients. I am told that these people are typically over 60 and that it isn't the same as UIP or NSIP. I didn't argue... it is still PF, right!! Maybe I need enlightening, but I thought IPF was like saying we have Interstitial Lung Disease (a catch all phrase).> > Stefani 61, Utah> ILD 2/2006, NSIP (cellular) 6/2009, Diabetes II 2/2006, Sleep Apnea 4/2009>

[Guest guest]

Stefani,I don't know if there is a typical age for IPF. I was diagnosed with IPF this year in May (moderate stage) and am 53 years old. After looking at my chest x-ray taken in Aug 2006 for pneumonia, doc thinks it was already there at age 50. My brother was diagnosed with IPF in 2005 (end-stage) and died at age 43. Unknown cause other than it could be a genetic predisposition for my family. C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Thursday, September 3, 2009 4:26:57 PMSubject: VATS Biopsy results

I went to my pulmo-dude today and got the biopsy results. Kind of curious. National Jewish "diagnosed" cellular NSIP. according to review here in Salt Lake, the biopsies indicated UIP-type nonidopathic. The reviewer went on to state that there was variable fibrosis, somewhat mild in nature with a tendency towards peripheral localization, along with peripheral honeycombing. My doctor sounded almost perplexed. As am I. Sounds like I do, but don't have anything... Wierd. My pulmo-dude is sending the slides along with a cover letter to National Jewish for them to review... because the knowledge and experience with PF is just not that strong here in Salt Lake City. I have sent an email to my National Jewish Health Center doctor (Dr. Fernandez), giving him a heads up. I also asked him to let me know if he needs insurance information for billing purposes.

Also met with local group. I ended up being a "featured speaker" because of what I am doing for PF Awareness week. I bought wrist bands from the pulmonary fibrosis foundation for family and friends with instructions on how to answer questions during awareness week. I am also having them ask their friends to call the congressional representatives to get HR 1079 approved. I shared the blue shirt Friday idea with them as well. Several people expressed interest in the online support group so I told them they would have to be "approved" but to go online and apply.

These people are primarily IPF, Ideopathic Pulmonary Fibrosis, patients. I am told that these people are typically over 60 and that it isn't the same as UIP or NSIP. I didn't argue... it is still PF, right!! Maybe I need enlightening, but I thought IPF was like saying we have Interstitial Lung Disease (a catch all phrase).

Stefani 61, Utah

ILD 2/2006, NSIP (cellular) 6/2009, Diabetes II 2/2006, Sleep Apnea 4/2009

[Guest guest]

Stefani,I was trying to think of a good analogy when I thought of hair..we all have hair right? Just like we all have Interstitial Lung Disease. But you might be a straight haired brunette while I am a curly haired brunette or even a curly haired blond. All the variations of 'hair' are still hair. So yes UIP and NSIP and PF and IPF are all ILD. I can't wait to go to National Jewish so I can hopefully 'define' myself better. My mother was 60 when she was diagnosed after a slow growing shortness of breath. She was diagnosed with IPF and died 5 years later. I on the other hand went into the hospital at the age of 46 and in 3 days with from a slight shortness of breath (that came out of no where) to being put on a ventilator and given a 50/50 shot of living. I was diagnosed at the time with Idiopathic Pulmonary Pneumonitis. After finally recovering I was stable for 5 years when I got pneumonia and was told I did have IPF. Not only that but there are some changes from the radiation I had for my breast cancer. I've looked good and hard at my xrays. They do not look like what lungs are supposed to look like. I have a good feeling that what I really have is NSIP. And that can affect how I'm treated which is why we all want to know exactly "what" we have. But in the long run, we all (well most of us) have progressive lung scarring that leads to an end to our present lives. I intend to fight as hard and as long as I can, and knowledge is power. I'm glad your pulmodude is getting more info, that means he can admit he doesn't know everything. My pulmodudette is the same way thank God. Thats why I love her.I am also ordering some wristbands, gonna try calling and see if they will take my order. Otherwise they won't get here in time.Talked on chat tonight WAS THAT COOL! So nice to put voices to names.Have a wonderful night SefaniDyane Pheonix ipf 02>> I went to my pulmo-dude today and got the biopsy results. Kind of curious. National Jewish "diagnosed" cellular NSIP. according to review here in Salt Lake, the biopsies indicated UIP-type nonidopathic. The reviewer went on to state that there was variable fibrosis, somewhat mild in nature with a tendency towards peripheral localization, along with peripheral honeycombing. My doctor sounded almost perplexed. As am I. Sounds like I do, but don't have anything... Wierd. My pulmo-dude is sending the slides along with a cover letter to National Jewish for them to review... because the knowledge and experience with PF is just not that strong here in Salt Lake City. I have sent an email to my National Jewish Health Center doctor (Dr. Fernandez), giving him a heads up. I also asked him to let me know if he needs insurance information for billing purposes. > > Also met with local group. I ended up being a "featured speaker" because of what I am doing for PF Awareness week. I bought wrist bands from the pulmonary fibrosis foundation for family and friends with instructions on how to answer questions during awareness week. I am also having them ask their friends to call the congressional representatives to get HR 1079 approved. I shared the blue shirt Friday idea with them as well. Several people expressed interest in the online support group so I told them they would have to be "approved" but to go online and apply. > > These people are primarily IPF, Ideopathic Pulmonary Fibrosis, patients. I am told that these people are typically over 60 and that it isn't the same as UIP or NSIP. I didn't argue... it is still PF, right!! Maybe I need enlightening, but I thought IPF was like saying we have Interstitial Lung Disease (a catch all phrase).> > Stefani 61, Utah> ILD 2/2006, NSIP (cellular) 6/2009, Diabetes II 2/2006, Sleep Apnea 4/2009>