Guest guest Posted February 23, 2008 Report Share Posted February 23, 2008 Oh my....I'm going to have to get busy to get caught up to you. Well, University of Chicago will be 3, then UTSW will be 4. Ok, I'll catch you, but give me a few months. Seriously, I think they do consider the diagnosis serious enough that no one wants to take another's word on it. When it comes to reading existing tests and to non-invasive testing I'm happy about that. If somewhere there is a mistake, I want it found. Otherwise, I'm just more secure in the diagnosis. Now, when it comes to some of the invasive or more painful tests, I think they need to take that into consideration and the factual findings of the existing tests. > > > > > > > > > > > > > > > > Dilwala, > > > > > > > > I'm so glad the biopsy is over and you are recovering > > nicely. > > > > > > Just > > > > > > > don't overdo, eat well and get enough rest. I am so sorry > > > > > though > > > > > > > about the confirmation of your diagnosis but don't pay too > > much > > > > > > > attention to the two years business. There are several here, > > > > > most > > > > > > > notably Joyce Dalton who outlived their prognosis by years > > and > > > > > > > years. As Peggy always reminds us, you have no expiration > > date > > > > > > > tatooed on your body! > > > > > > > > > > > > > > > > You have many things in your favor. You are young, you > > are in > > > > > > > great overall health and excellent physical condition. > > Learn to > > > > > be > > > > > > > extremely protective of your health. Respiratory infections > > are > > > > > > > really bad news for us, do everything you can to avoid them. > > > > Eat > > > > > > > well, get plenty of rest etc etc. You might want to think > > > > about > > > > > > > requesting that the slides from your biopsy be read by a > > > > > > pathologist > > > > > > > at a university medical center that has an interstitial lung > > > > > > disease > > > > > > > dept. When my biopsy was done the slides were read by the > > > > > > > pathologist at the local hospital I was in, a pathologist at > > > > > > > Columbia Presbyterian in NYC and a pathologist at Duke, in > > NC. > > > > > > > Multiple opinions can be very helpful. > > > > > > > > > > > > > > > > By the way, I'm ready to go to Hawaii as soon as Bruce > > hands > > > > > over > > > > > > > the deed!! > > > > > > > > > > > > > > > > Beth in NC age 48 Fibrotic NSIP 06/06 > > > > > > > > > > > > > > > > " For as long as I shall live, I will testify to Love. " > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Deed to Hawaii; DilWala's > > return > > > > > from > > > > > > > VATS, and the dreaded diagnosis > > > > > > > > > > > > > > > > Hi All, > > > > > > > > > > > > > > > > VATS was done on 2/12, Tuesday. > > > > > > > > I was sent to a regular room and not to ICU. I took that > > as a > > > > > > good > > > > > > > > sign. > > > > > > > > X-rays were taken on the morning of 2/13, followed by a > > visit > > > > > by > > > > > > > the > > > > > > > > surgeon who said that X-rays looked good. > > > > > > > > Chest tube was clamped around 10 p.m. on 2/13. > > > > > > > > X-rays were repeated on the morning of 2/14. Surgeon said > > > > they > > > > > > > > looked good, removed the chest tube, and I was sent home. > > > > > > > > Bruce, I do feel that I was rushed. I could have pouted > > but > > > > > opted > > > > > > > > not to. The surgeon had very poor bedsides manner, > > however, > > > > as > > > > > > > > advertised he did have good hands. > > > > > > > > All vital checks during the hospital stay were > > exceptional. > > > > > > > > I was in pretty serious pain until 2/20. I had very > > limited > > > > > > > > movement. I slept sitting up on the sofa. Coughing and > > > > > breathing > > > > > > > > exercises were difficult. However, most of it is now > > behind > > > > me. > > > > > > > > Pain is subsiding. I have slept in bed for last two > > nights. > > > > > All > > > > > > > > bodily functions are normal. > > > > > > > > I have a visit with the surgeon on 2/25. I'm hopeful that > > by > > > > > > March > > > > > > > > 1st I will be back to living a normal live as I was before > > > > > going > > > > > > > > thru the VATS. I don't known if this is a real > > expectation so > > > > > > > > please feel free to enlighten me. I have already seen my > > PC > > > > > and > > > > > > > the > > > > > > > > Pulmonologist. Both have stated that right lung appears > > to be > > > > > > > > inflated. If the surgeon does not order X-rays on the > > 25th, I > > > > > > will > > > > > > > > have my PC repeat the X-rays to confirm. > > > > > > > > > > > > > > > > So, with my fingers crossed I visited the Pulmonologist on > > > > > 2/20. > > > > > > > He > > > > > > > > had already received the report form the hospital's > > > > > Pathologist. > > > > > > I > > > > > > > > wish the news was different but the diagnosis is of UIP. > > My > > > > > > > > Pulmonologist hinted that this diagnosis is suspect due to > > > > > > > > an `omission' in the Microscopic Description of the > > > > > Pathologists > > > > > > > > report. I have forgotten the word he used but he stated > > that > > > > > it > > > > > > is > > > > > > > > a MUST if one is to be diagnosed with UIP. I had to focus > > on > > > > > my > > > > > > > > wife who became hysterical with the news that we should > > make > > > > > > plans > > > > > > > > as I may only have up to two yrs if this diagnosis is > > > > > accurate. > > > > > > > The > > > > > > > > Pulmonologist is now referring me to UCSF medical center > > for > > > > a > > > > > > > > second opinion, as well as, for treatment. > > > > > > > > > > > > > > > > Below are the Microscopic Description and the Diagnosis. > > > > > Bruce, > > > > > > et > > > > > > > > al. please read/comment. Also, Bruce there is no wiggling > > out > > > > > of > > > > > > > > handing over the deed to Hawaii. Not only the offer was > > > > > > > > unsolicited, it was unconditional. Besides, I have already > > > > > > > promised > > > > > > > > the Air Family an all expensed paid trip, so no if ands or > > > > > butts > > > > > > > > about it..... > > > > > > > > > > > > > > > > Microscopic Description: > > > > > > > > > > > > > > > > Sections show lung which has a patchy distribution of > > > > fibrosis > > > > > > and > > > > > > > > mostly chronic changes. There is subpleural fibrosis and > > > > > > > > bronchilozation and honeycomb formation of some of the > > > > > subpleural > > > > > > > > pulmonary tissue. Other areas show a more diffuse > > increased > > > > > > > > interstitial fibrosis of alveolar walls. Other areas show > > > > > > > > essentially normal alveoli. The interstitial inflammation > > is > > > > > > > > fairly low and patchy, most commonly associated with the > > > > areas > > > > > of > > > > > > > > heavy fibrosis. There is also some interstitial > > hemorrhage. > > > > > There > > > > > > > > are no granulomas or evidence of acute inflammation in > > this > > > > > > > > material. Rare foci of some organization of exudate are > > > > > > > identified, > > > > > > > > but this is not a conspicuous component and is often scan > > in > > > > > > areas > > > > > > > > of end stage lung. These changes are compatible with usual > > > > > > > > interstitial pneumonia or fibrosing alveolitis. > > > > > > > > > > > > > > > > Diagnosis: > > > > > > > > > > > > > > > > Right middle and right lower lobe, wedge biopsies > > > > > > > > -- Usual Interstitial Pneumonia ( Idiopathic pulmonary > > > > > fibrosis) > > > > > > > > > > > > > > > > Dilwala, 47, UIP 2/08, Northern California > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > brett bowser > > > brett@ > > > > > > > > > > > brett bowser > brett@... > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.