Sunny

[Guest guest]

Sunny,

I don't know why your doctor is so reluctant to prescribe oxygen. I have to tell you that the doctors visit you described scares the daylights out of me. I hate to be this blunt but Sunny you need a new pulmonologist. If your sats dropped to 91 after two laps around a desk what are they doing when you go up a flight of stairs, or walk through the supermarket? He said your oximeter is "unreliable"? If it's approved by the FDA it's as reliable as the one he has in his office.

Many members here have had experiences with doctors like you describe. Have you considered switching pulmos? I've probably asked that before, my memory is kind of shot but Sunny this is so important. Many pulmos just don't know alot about interstitial lung disease. A specialist in ILD can really help you make sense of this.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wednesday, April 22, 2009 4:57:39 PMSubject: Re: Sher

Beth,

I have to take prednisone for my Lupus and Sjogrens and Arthritis. I am miserable without it. I only take 30mg a day so maybe that's why I don't have any side effects. At least I don't think so. I do sleep a lot but being in pain wears me out so that might be all it is. They are saying that I have had IPF for a lot longer than I realized and I am wondering if the reason it took so long to be diagnosed was because I have been on prednisone for 3 years. I had my lung biopsy last Monday and called for results today. They said I had to come and see the doctor. That scares me cause it must be bad news. They did a night oxymeter and it was bad so I will be going on night O2. My pulmo doc is reluctant to give me a 24 hour oxymeter and says the finger one I have is unreliable. I told him my results from it were showing my oxygen dropping below 80% with moderate

exercise. In the doctor's office after two laps around the desk it dropped to 91% and my heart rate went to 186. Pulmo dude is calling my heart doctor to discuss the pulse rate as he thinks something might be wrong with the right side of my heart. I don't want to go on O2 but I am tired of feeling exhausted and almost passing out so many times a day. Why are doctor's so reluctant to give us O2?

Sunny, IPF, 09 Idaho

From: Beth

Sent: Saturday, April 18, 2009 11:09 AM

To: Breathe-Support@ yahoogroups. com

Subject: Sher

Sher,

Some people report increased energy when on higher doses of prednisone. It can be a jittery, restless kind of energy and insomnia usually goes along with it. I never found it to be a productive kind of energy, it didn't allow me to accomplish anything extra. Even with that change that prednisone can make in some of us we're still limited by our diseased lungs. At least that's my experience. I know that others have been through different scenarios related to prednisone.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Sher Bauman <bofus (AT) wbcable (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Saturday, April 18, 2009 12:22:50 PMSubject: Re: Hi Sher

BJ... I did miss the post...

I'm crossing my fingers for a good sale.

I guess it's not doable for your daughter to come to you and help you move. I'm sure you thought of that.

Gosh BJ you just can't do that move alone. I don't mean to be intrusive but can you hire help or can your kids hire help? Often high school boys are looking for work. Or now, grown men need the work!

Please don't do that by yourself! It's just too much for women of our 'delicate persuasion'. ;o)

I can't tell from your post... are you using O2 when you away from home? If not that sure could be dragging you down.

With my limited knowledge of prednisone (Hey, MB...give us a hand here) I think it gives you energy. At least at some level. Maybe the dosage has something to do with it...

I think you know when you are "progressing" BJ... being 'tired' after being out may not be progression. ..

Talk to your dr about your meds/O2 and what fears your sister has for you.

You could call the Police Dept and inquire about the incident.... let's hope that gives you confidence!

Do take care now!

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Hi Sher

Sorry to hear you have been so sick. I did notice that you hadn't been posting and I mentioned it to my wife, but we have had my son, DIL, and 2 grandkids (2 & 5 yrs. old),

with us for the last 12 days and I haven't been on the computer other that 10 minutes, 3 different days. My butt is dragging trying to be involved in the activities and I do feel very tired all the time----only three more days and they will be going back to Olympia, Wa.

My last visit to the Dr. (April 6th) I did my PFTs and everything is exactly the same except for my DLCO---it has dropped from 55% down to 49%. In the last 10 months it has dropped from 68% to 49%, so needless to say it is starting to make me nervous.

What has been going on with you? You have usually been the "rock" of the group? Hope everything is OK and we can contribute it to the weather? I did hear you talking about going to the U of W medical hospital for an evaluation? I just talked to my Dr about checking at the U of W for a transplant evaluation, so I may go there also, but I don't know when.

Tell Rich hi and hopefully I will be making the trip up to Washington again and I can meet up with you guys again.

Hope you get better and back to posting!!!!! !!!!

G. UIP/ IPF 5/07