Sunny

[Guest guest]

Sunny

I don't know what type of email you got from Yahoo but your messages are coming through to the board just fine. I checked your membership and there's no issue. You didn't break any kind of rule here so whatever email you got from Yahoo has nothing to do with Breathe Support. As I said, I just double checked your membership and everything appears to be fine, messages are not bouncing and everything looks great.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thursday, March 5, 2009 1:22:01 AMSubject: Re: Re: ILD/Pulm. Fibrosis

Jan, I don't know if you will get this as I was just notified by Yahoo that I violated some rule. It has to be a mistake but it is still hurtful. I have been reading a lot and there is much research to suggest the GERD and Sjogrens can be factors. Since I have both I think one of my 7 docs should have been paying closer attention but in reality it would not have made much difference. My sputum report said massive infection so I am on antibiotics now. Had my ct today and they gave me a cd and I will get the report tomorrow. My pulmo guy is taking March off so I guess he'll tell me his take then. It is all very scary. I hope Yahoo doesn't kick me off this site as it has helped me so much already. Sunny

From: Jan

Sent: Monday, March 02, 2009 10:17 AM

To: Breathe-Support@ yahoogroups. com

Subject: Re: ILD/Pulm. Fibrosis

> Hi, RPickle Most patients have lost at least 50% of their lung capacity by the time they are diagnosed with PF Is that because we wait too long to see a doctor, thinking we are just out of shape or we are just tired....or maybe the doctor we see just doesn't pick up on it right away...no one knows why it takes so long to get diagnosed. Maybe it is just that we do not feel the symptoms until we have had the disease for a while and lose our lung function...I know it took three months for me to get diagnosed because medical standards require you to see a primary care doc, then with sob symtoms he sends you to a cardiologist for heart testing and if they find nothing it is on to a pulmonologist for lung testing. My lung doctor was excellent, but every test kept coming back normal even though my pulse ox was below 90 and I could barely speak a complete sentence. Not until he had done three

Cat Scans (all normal) did he finally order a High Resolution Cat Scan, which showed the scarring and we went on to an open lung biopsy which gave the final answer of PF.You have a lot of autoimmune issues of which PF fits right in there! They keep trying to blame my PF on my having Crohns disease, another autoimmune disease....however my GI says he has never, ever seen Crohns causing PF or any other lung problem in his whole career....so I don't really think it is. Once you get one autoimmune it is possible to develop others...as you and I both have found out. It just means our autoimmune system is out of whack and again, no one knows how to make it work right again either. Most people with PF or any other inflammatory disease will always have a high Sed Rate. It is in itself a marker for high much inflammatory processes are going on inside you. With a patient with Rheumatoid Artheritis, a Sed

Rate abnormally high, means their arthritis is very active at that point and is why their pain level is higher than normal, etc.I sure wish you didn't have to suffer with all this, just know you are in good company here and there are a lot of people who have traveled this road ahead of you, that can answer and lend you support !> > t> From: rpickel1@... <rpickel1@.. .>> Subject: ILD/Pulm. Fibrosis> To: Breathe-Support@ yahoogroups. com> Date: Saturday, February 28, 2009, 12:05 AM> > > > I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also

have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the bacteria still very much there. The the gastro doc told me I have> Barrett's Disease probably caused by my GERD which they

can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is accurate? They haven't put me on oxygen but I am having a whole bunch

of other tests done next week. Does> any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you.>