Sunny

[Guest guest]

Good morning and welcome! We tell everyone who joins us that we're sorry you had reason to look for a group like this but since you did we're glad you found us.

Believe me all of us understand what it feels like to be absolutely overwhelmed and completely stressed just when we need the most peace and rest.

My situation is not too different from yours. I'm 49 and was diagnosed with NSIP (non-specific interstitial pneumonitis) in June of 06, GERD later that year, and in November of 08 Dermatomyositis (an auto-immune disease that causes rashes and muscle inflammation and weakness).

Like you, I've lost about 60% of my overall lung function and capacity but unlike you I've been on oxygen since my diagnosis. I too can sit at rest and have my sats stay in the mid to high 90's but the minute I do anything else, even just talk on the phone and they begin to drop. If I tried to walk, even from room to room in my home, my sats would drop into the 70's within a couple of minutes. Have your doctors done something simple like a 6 minute walk? You might want to ask your doctor about that. Do you own and oximeter? This fairly inexpensive tool will help you know for sure whether you should be on supplemental O2 and will give you evidence you can take back to your physician if you need to.

You mention that you are considering looking for another opinion, I would absolutely encourage you to do that. The fact that your pulmo seemed "annoyed" that you cried when hearing your diagnosis is a huge red flag for me. Why should you have to put yourself in the hands of someone who clearly lacks empathy or even basic human compassion? You don't say where you live but one suggestion I would make is to get yourself to a university medical center with specialists in interstitial lung disease. If you go to www.ipfnet.org you will find a list of research centers dedicated to pulmonary fibrosis and patients who have these diseases. I get my care at Duke in North Carolina. Even if you don't live close enough to one of the centers on the list it can be worth the effort to get to one of them to be evaluated. There is much information and understanding to be gained.

Please hang around here. I joined this group in July of 2006 shortly after my diagnosis. I was terrified and didn't know if I'd be alive to see that next Christmas. Thanks to the grace of God, my doctors and the care I've received, I'm still here almost 3 years later. None of us knows what will happen tomorrow but one of our members (thanks Peggy) likes to remind us all that we don't come with an expiration date tatooed on our fannies. Remember that!

Sunny, I hope that you find all the information you are looking for here and just as important I hope you find the support and friendship that this board has blessed me with.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08