Re: Re: Acronym Soup - definitions anywhere?

[Guest guest]

Hi Beth,I just read that whole section - Thank you for sending that link. I had been to Cleveland Clinic's web site but had not gotten to that particular page. Mine is an interesting case. I had the hydatiform molar pregnancy in 1979 that persisted and was treated with methyltrexate/citrivorum rescue for 8 days. Dr. Raghu doesn't think that had anything to do with it but I was pretty ill for a year or so after all of it was over. I used to nearly pass out in grocery stores but wrote it off that I was just recovering from 3 months without any nutrients and also poor eating from the nearly constant vomiting at the time. I had dropped to below healthy weight and anytime I tried to eat my stomach just wanted to spew it back out. I had to eat such small quantities for a long time. Maybe it was lung damage

and I just managed to get healthier overtime, I don't know. In 2007 we went on 2 trips to the desert back to back (with only a few days between back in Denver). It was cold and windy in Las Vegas and we were sitting outside a lot watching a tennis tournament. The next week in Scotsdale it was hot and after that trip I got acutely ill. I was wheezing and turning blue and that was what eventually got me into National Jewish several months later. By the time I got to N.J. I was already so much better that I nearly cancelled my appointment. To this day I wonder if I hadn't cancelled that appointment if I wouldn't just think I was the same as I was before the whole incident. My PFT's are nearly the same as they were in 2004 (I had them done after thatching the lawn and getting a little short of breath) and they really haven't changed since those were done. My CT scan is the kicker though. I need to find

out exactly what they are seeing in that I think. It's a conundrum for sure. I did check and my insurance will cover a pulseox and possibly a Heart Rate monitor if Dr. Raghu will prescribe them. I am still not interested in getting a biopsy because I am doing well and staying stable and hoping I can just keep on keeping on in this plane for as long as I can. The predictions sure are awful in these web sites though and they always put them at the end. The treatments sound like a lot of 'guesswork' too. I am counting my lucky stars (at least so far) that I don't have any other conditions. I think I'll stay away from tests because they'll eventually find something - LOL.You're a peach - thanks again,Peggy Ellis (big tennis loser today but laughing cuz I can play - really confused the other players but it can be our secret here in the network), ILD 2008, 53 yo--- On

Sun, 6/14/09, Beth wrote:Subject: Re: Re: Acronym Soup - definitions anywhere?To: Breathe-Support Date: Sunday, June 14, 2009, 4:29 PM

Peggy,

I think you might mean you may have HP and not IPF. IPF (idiopathic pulmonary fibrosis) and HP (Hypersensitivity pneumonitis) are both ILD's (interstitial lung disease). This alphabet soup is all so confusing isn't it?

Here's a link to the Cleveland Clinic's website. They've got a really good section on ILD's.

http://www.clevelan dclinicmeded. com/medicalpubs/ diseasemanagemen t/pulmonary/ interstitial- lung-disease/

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: artquilterpeg <artquilterpeg@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, June 14, 2009 7:04:09 PMSubject: Re: Acronym Soup - definitions anywhere?

Thanks Beth - I had a radiographic assisted biopsy of my breast - that was enough to make me shy from biopsy but my lung really scares me. I guess from reading the articles it would be good to know if you have idiopathic vs hypersensitivity as those treatments are opposite. Right now I'm not on any steroids of any kind but I do think the inhaled steroids did help so maybe I have HP not ILD . . . Peggy E.>> Peggy,> VATS stands for Video Assisted Thoracic Surgery. They do lung biopsies by this method, using scopes and tinier incisions as opposed to the more invasive open lung biopsy.> Both methods however are major surgery and sometimes I think doctors

underestimate how

difficult recovery from a VATS can be for someone whose lungs are already compromised.> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > ____________ _________ _________ __> From: artquilterpeg <artquilterpeg@ ...>> To: Breathe-Support@ yahoogroups. com> Sent: Sunday, June 14, 2009 5:49:41 PM> Subject: Acronym Soup - definitions anywhere?> > > > > > Hi Everyone,> > I was wondering if we have a document with all the acronyms and their full name? I had written a few down and was reading various articles and figured some of them out but still wonder what VATS stands for. > > It might be helpful for us

'newbies'

to understand what everyone is saying. > > Thanks,> Peggy Ellis (ILD 2008, 53 y.o. enjoying the cool overcast day here in the PNW)>