Re: Sher' thinking too much?

[Guest guest]

Sher,

I agree that you may be overthinking this. While Dr. Raghu has stated numerous times in the past that he believes that prednisone is underutilized in those with IPF (a statement that puts him at odds with most other IPF experts by the way) there is no reason to think he'll insist that you take it. He may suggest it but you are of course free to say, 'no thank you'.

If by chance he does suggest it, I'd be interested in hearing his reasoning. I was started on IV steroids in the hospital well before we had a firm diagnosis of NSIP. Initially all they knew was pulmonary fibrosis. I was in a community hospital, with no expertise in pulmonary fibrosis. But I responded immediately to the steroids so I'm very glad they were used. ly I'd be dead if they hadn't used them. I'm glad I was on prednisone and I was happy to get off of it. I have no desire to go back on but I will if it's necessary because I know how well I responded the first time.

Don't worry too much, just go, get evaluated, pick his brain and think over his recommendations. You can't be harmed by an evaluation. The more information we all have, the better off we are.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, June 16, 2009 12:50:19 PMSubject: Sher' thinking too much?

I've read on a couple posts lately, re: Dr. Raghu in Seattle, that he apparently wants to do bios and/or use prednisone.. .

I do not want to do either, so I'm wondering if knowing this ahead of time would defeat my purpose in going to see him??

What say you?

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

[Guest guest]

Sher

I think going there may still be worth the time and effort, even though

not my first choice of doctors. You're knowledgeable enough and strong

willed enough. He may have ideas regarding your condition that are

helpful and different observations based on CT's I'm sure he'll take.

Just be prepared that he may have views inconsistent with what you might

choose. That's ok. I respect my rheumatologist but not about to do

everything he'd like me to do.

I think the way the process should work is:

1-Review History in Detail

2-Thorough labs and CT's and PFT's.

3-Discussion of Findings

4-Recommendation of Treatment, if any

5-You going home, thinking, making choices

It's numbers 4 and 5 that get complicated as many doctors simply feel

they are going to tell you what to do and you should do it blindly. I

don't agree with that and know you well enough to know you won't do

that. Furthermore, I think expecting us to make decisions on the spot

when the findings are discussed and advice given is inappropriate. We

need some time to research and think and decide.

>

> I've read on a couple posts lately, re: Dr. Raghu in Seattle, that he

apparently wants to do bios and/or use prednisone...

>

> I do not want to do either, so I'm wondering if knowing this ahead of

time would defeat my purpose in going to see him??

>

> What say you?

>

>

> MamaSher; 70, IPF 3-06, OR.

> Nasturtiums

> Don't fret about tomorrow, God is already there!

>

[Guest guest]

Bruce... I always appreciate your input and you are spot on. I will not do anything I do not feel is right for me.

I can see prednisone in small doses but after taking w/my doc a few days ago the two of us decided not to go there.

I'm doing really pretty darn good so why change anything?

If it works don't fix it and I'm workin' right now.

I did feel myself llllllean a little bit toward MAYBE a bio because I'm so curious as to what strain I have that is so slow progressing. I sound like I want to progress FASTER don't I?? lol

It's the information that I want of course but didn't hold on to the idea of a bio very long.

If I were younger I think I may think differently but I are what I are.

Hugs to you.

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

Sher' thinking too much?>>>> I've read on a couple posts lately, re: Dr. Raghu in Seattle, thathe apparently wants to do bios and/or use prednisone.. .>> I do not want to do either, so I'm wondering if knowing this aheadof time would defeat my purpose in going to see him??>> What say you?>>> MamaSher; 70, IPF 3-06, OR.> Nasturtiums> Don't fret about tomorrow, God is already there!>

[Guest guest]

Hi MamaSher,No, he still treats me and I won't do either. He hasn't tried to strong arm me or anything. I think the GERD knowledge might be helpful if that is the cause/exacerbator of my situation. You'll still want someone to order the proper tests (like the 24 hour thing which really is only one icky day) and some things can be treated which might contribute. Other people on the post have had a difference experience with him than I have. I never judge as I am a pretty 'in charge' patient. I never give my decision power over to a doctor or anyone so I just look at them for their knowledge then I do my own research, soul searching and make a decision. I even asked him if he would still treat me if I said "no" to the biopsy and he laughed and said 'of course'. We also never know for sure what

conversations took place between people and their doctors. Some people want to live so badly they are not so concerned about the quality of the time left and others are not so concerned about quantity as quality and the doctors have to work with all of those different people and given this disease it can be hard to help people squeeze the last little bit of time out. I think you should see him or Ralph if you have PH or PAH whatever the alphabet soup is for it. I like Dr. Raghu - he is honest and a straight shooter and is looking outside of the airway for problems that might be causitive. Read those articles I posted yesterday. If after you meet him you can decide for yourself. Peggy E. 53yo ILD 2008, tired from my PT on my R hip which is also hurting like the dickensSubject: Sher' thinking too much?To: Breathe-Support Date: Tuesday, June 16, 2009, 9:50 AM

I've read on a couple posts lately, re: Dr. Raghu in Seattle, that he apparently wants to do bios and/or use prednisone.. .

I do not want to do either, so I'm wondering if knowing this ahead of time would defeat my purpose in going to see him??

What say you?

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

[Guest guest]

Peggy E. I am much as you describe yourself being w/docs.

There is no doubt about the good doc he must be. I really like an honest/straight shooter person. Doc or otherwise.

So far I'm dx with only IPF.

I have other chronic/painful health issues like arthritis and fibromyalgia and more but the IPF really was a shock.

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

Sher' thinking too much?To: Breathe-Support Date: Tuesday, June 16, 2009, 9:50 AM

I've read on a couple posts lately, re: Dr. Raghu in Seattle, that he apparently wants to do bios and/or use prednisone.. .

I do not want to do either, so I'm wondering if knowing this ahead of time would defeat my purpose in going to see him??

What say you?

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

[Guest guest]

Hi MamaSher,I really think you'll want to investigate the GERD - I am about to put a post on the site about my CT results and it really is good news. Dr. Raghu is one of the principal researchers about this causal relationship and if you really are only IPF and slow progressing it might have something to do with that. Evidently many of the patients are not even aware they have it. I didn't. I only had a small piece of evidence and mentioned it almost in passing to Dr. Raghu. I am beginning to think that the reason why we moved here is so that I could get him as a doctor because he would find that cause and keep my disease stable. I am not getting any pressure from Dr. Raghu to do anything. He recommends and I decide. It's as it should be. I think in defense of doctors (and I hate to defend

them but in this instance I will) some patients want to be TOLD WHAT TO DO so the doctors do that. My father was like that and my Mother-in-Law who is undergoing aortic valve replacement surgery on Thursday is like that. Good luck - let's definitely get together when you come out. I can tell we'll get along.Tell him - Hi from me,Peggy E.

From: Sher Bauman <bofus (AT) wbcable (DOT) net>Subject: Sher' thinking too much?To: Breathe-Support@ yahoogroups. comDate: Tuesday, June 16, 2009, 9:50 AM

I've read on a couple posts lately, re: Dr. Raghu in Seattle, that he apparently wants to do bios and/or use prednisone.. .

I do not want to do either, so I'm wondering if knowing this ahead of time would defeat my purpose in going to see him??

What say you?

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