Re: Reading an oximeter

[Guest guest]

Hi Joyce,

I think you meant that response for Arianne and not me. But thanks for the info.

AB

To: Breathe-Support Sent: Tue, January 26, 2010 7:16:57 PMSubject: Re: Reading an oximeter

Adrienne

mine averages around 115 on the treadmill

about 105 around the house

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org > > > >

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Dave,

Having UIP does not automatically rule out having a connective tissue disease. If you have UIP and a connective tissue disease what that means is that you don't have IPF because the cause of the UIP is now known. Does that make sense? Dave from what I've read and been told you are young for true IPF. It does happen that someone in their 40's gets IPF but it is rare. What is more common is that when someone in their 30's 40's or 50's gets a fibrotic lung disease thit is unrelated to exposure to some kind of toxin or allergen, there is often an underlying connective tissue/auto immune disease. Here is a link to an article in the Journal of Rare Diseases:

http://www.ojrd. com/content/ 3/1/8

The average age of onset of IPF is 66. That's 23 years older than you are now. In your shoes I'd be aggressively persuing more information and want to completely rule out connective tissue diseases. Some might ask (I hear you Peggy) why it matters so much. Well it matters because connective tissue/auto immune diseases have treatments and those treatments can slow the progress of the fibrosis. For me it's worth knowing what's going on with my body.

It's not surprising that no one asked you about rashes or other skin conditions, no one asked me either until I was at Duke. In all fairness though I was on so much prednisone for such a long time that there wasn't any test that was going to pick up any auto immune condition. I had to be completely off the prednisone for more than 6 months before the "mechanics hand" started to show up again.

If it were me Dave, I would ask for a referral to a rheumatologist. You might even want to see if there is someone you can see at Columbia when you go in March. We are talking about the same NY Pres/Columbia in Manhattan. I saw Simonelli MD PhD there beginning in August of 06 through November of 07 when I moved to North Carolina. If I still lived in NY, I'd still be seeing Dr. Simonelli. I think very highly of him and his staff.

I hope some of that helped a bit. This is all my opinion and it's worth what you paid for it. Don't substitue my judgement for your own, I'm just sharing my point of view.

Please keep me posted on how you're doing!>

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

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From: davegreg11 <davegreg11 (AT) yahoo (DOT) com>> To: Breathe-Support@ yahoogroups. com> Sent: Mon, January 25, 2010 1:31:08 PM> Subject: Beth or anyone who may know - Dermatomyositis> > > Hi Beth,> > I read your post on your Dermatomyositis. I also get some rashes on my arms, chest, and over my eyes - bridge of nose and eyebrow area. I think I have had evey blood test, but my pulmo Dr. never even checked for rashes or asked about any. My VATS came back UIP, so does that mean i cant have a connective tissue disease as well? As I said in a previous post that now that my biopsy came back my Pulmo Dr. has no interest in seeing me unless I go on 1 of her trials, (Dr. Glassberg - University of Miami). I am going to a new Pulmo dude tomorrow that was recommended by my PCP. Should I automatically ask him for a referral to see a Ruemotologist or some other specialist who may check other causes or because I have UIP than it does not matter??> > I also read that you went to Columbia when you were first sick. Was this NY Pres./ Columbia Hospital in NY? I have an appointment with Dr. Lederer on 3/4 for a second

opinion and for Lung Transplant Evaluation. I will also see Dr. Sonnet the head Surgeon of the TX unit. He is the Dr. that is doing the Web Seminar on Thursday night.> > Thanks,> Dave, 43, Miami, UIP/IPF 11/09> >

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