Huff n Puff Forums

Joined: 17 Jan 2010 Posts: 29 Location: Iowa

Well I am going to my pulmonologist at the University of Iowa tomorrow. I am hoping he will be more help then the last time I was there. He told me last visit he didn't want to do a biopsy until I was completely off steroids, I have been on 10 mg daily for a year, with many increases during bad times. SO I am guessing I won't be off any time soon. So I am going to try to talk him into doing a biopsy ASAP, so we can figure out what is going on. They are sure I have severe asthma and ILD? But with SO MANY ILD's, they have done TONS of labs and tests and nothing comes back conclusive. So wish me luck!

Tricia

Posted: Mon Feb 08, 2010 1:47 am

Trisha,
I wish you the best of luck. Let us know what your Pulmo says.
Cheryle

Joined: 27 Feb 2008 Posts: 265

Good luck!

Joined: 06 Aug 2009 Posts: 99 Location: Tallahassee FL

Thinking good thoughts for your appt, sending prayers and good vibes your way. Keep us posted.

Posted: Mon Feb 08, 2010 5:22 pm

Tricia,
Good luck tomorrow! We also see a new pulmo tomorrow.
I wish you all the best and hope they can find out exactly what is going on soon.
cat

Joined: 17 Jan 2010 Posts: 29 Location: Iowa

Well here is what he said: He said I have terrible asthma...that needs to be controlled. I have my blood levels drawn on the 16th to get approval to start xolair from insurance. After hopefully 3 months we will start a slow wean off steroids? I asked about my "underlying lung disease", he said he still believes I have "something" else, but he isn't worried about it yet. He said that the asthma is the bad one right now, that is causing my need for steroids and oxygen. He wants to work on controlling that and then down the road do more testing to figure out what else is going on. He did say that if the xolair isn't effective or I still can't wean off the steroids, he would "look" sooner. I don't know how I feel...HAPPY Smile

scared? worried?

Tricia

Posted: Mon Feb 08, 2010 10:54 pm

Tricia
Try not to stress too much. I know I can get into that so easy and it never makes things better. An example is Jim choked on some water tonight and he yelled to me "I'm alright just water" So I am going to try and not obsess about every little thing that happens and live in each day. I pray that you will find the answers you seek and the Dr to help with that, and freedom from fretting .
Please let us know how your Dr. appointment goes.

cat

Posted: Tue Feb 09, 2010 5:48 am

Good luck..

Joined: 17 Jan 2008 Posts: 174

I guess just feel "status quo" for now. Sounds like he still thinks it's allergy related if they want to push the xolair. It's not an unreasonable approach as long as your pulmonary function and oxygen needs are not getting worse. Did you say you do have a response to bonchodilators with methocholine challenge, or you couldn't get that test done?

Joined: 17 Jan 2010 Posts: 29 Location: Iowa

I couldn't get the methocholine challenge, because every time (3) they have tried to take me off my advair I end up on oxygen and in the hospital after just 1-2 days and I need to be off of it for 7 days for the test. But I DO respond to brochodilators. It has been proven with pre/post PFT's when I can't breath. As for not getting worse? I feel like I am, I now require oxygen to sleep (but pass my sleep study last year). And get SOB doing minimal now. My PFT's are hit or miss, the one yesterday was 77% (best I have ever had in the 3 years I have been sick) BUT I am on 50 mg of steroids, so it's hard to tell....My PFT's are usually 65ish.

Tricia