Sher

April 18, 2009

Thanks MB.... I do remember now that my neighbor from years ago was on prednisone but not with PF.... she worked around her place like 3 people and she was then, in her 80s.

Thanks for the info...

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

April 18, 2009

Thanks MB.... I do remember now that my neighbor from years ago was on prednisone but not with PF.... she worked around her place like 3 people and she was then, in her 80s.

Thanks for the info...

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

April 18, 2009

ette... have you ever tried Miralax???

This is a pwdr supplement stirred into water or juice and taken each day. It doesn't taste bad and I'm still working out the "results". HAHAHAA

sorry, I just couldn't resist.

Now this stuff is for people like me who have impactions regularly. So far I am doing ok...as I said, adjusting the amt used to get the best result.

I should have responded to your email sent to my inbox but didn't recognize your name and saved to answer later and realized I had deleted it....not intentionally.

Anyway I'm not using prunes plus Miralax and that is where I will leave this delicate subject.

If I can be any help email me personally...

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

Re: Sher

Oh Ms Sher,I forgot about prunes but they don't move me either! I need the senna. Seems like my only alternative. LOLBe blessed,ette Northern DelawareSLE 99, TTP 99, Spine 98, PF noted 98, MS 04, AH/PBC 04, PF & PH 06, HS 09...???Sent from my Verizon Wireless BlackBerry

April 18, 2009

ette... have you ever tried Miralax???

This is a pwdr supplement stirred into water or juice and taken each day. It doesn't taste bad and I'm still working out the "results". HAHAHAA

sorry, I just couldn't resist.

Now this stuff is for people like me who have impactions regularly. So far I am doing ok...as I said, adjusting the amt used to get the best result.

I should have responded to your email sent to my inbox but didn't recognize your name and saved to answer later and realized I had deleted it....not intentionally.

Anyway I'm not using prunes plus Miralax and that is where I will leave this delicate subject.

If I can be any help email me personally...

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

Re: Sher

Oh Ms Sher,I forgot about prunes but they don't move me either! I need the senna. Seems like my only alternative. LOLBe blessed,ette Northern DelawareSLE 99, TTP 99, Spine 98, PF noted 98, MS 04, AH/PBC 04, PF & PH 06, HS 09...???Sent from my Verizon Wireless BlackBerry

April 18, 2009

Aloha from Hawaii to all.

Also, ette you might try some Benefiber. It helps regulate.

Aloha,

Judy (OH) IPF 11/06 TX 8/07

>

> ette... have you ever tried Miralax???

> This is a pwdr supplement stirred into water or juice and taken each day. It

doesn't taste bad and I'm still working out the " results " . HAHAHAA

> sorry, I just couldn't resist.

>

> Now this stuff is for people like me who have impactions regularly. So far I

am doing ok...as I said, adjusting the amt used to get the best result.

> I should have responded to your email sent to my inbox but didn't recognize

your name and saved to answer later and realized I had deleted it....not

intentionally.

> Anyway I'm not using prunes plus Miralax and that is where I will leave this

delicate subject.

> If I can be any help email me personally...

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

> Nasturtiums

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

>

> Re: Sher

>

> Oh Ms Sher,

>

> I forgot about prunes but they don't move me either! I need the senna. Seems

like my only alternative. LOL

>

> Be blessed,

> ette

> Northern Delaware

> SLE 99, TTP 99, Spine 98, PF noted 98, MS 04, AH/PBC 04, PF&PH 06, HS

09...???

>

> Sent from my Verizon Wireless BlackBerry

>

April 18, 2009

Aloha from Hawaii to all.

Also, ette you might try some Benefiber. It helps regulate.

Aloha,

Judy (OH) IPF 11/06 TX 8/07

>

> ette... have you ever tried Miralax???

> This is a pwdr supplement stirred into water or juice and taken each day. It

doesn't taste bad and I'm still working out the " results " . HAHAHAA

> sorry, I just couldn't resist.

>

> Now this stuff is for people like me who have impactions regularly. So far I

am doing ok...as I said, adjusting the amt used to get the best result.

> I should have responded to your email sent to my inbox but didn't recognize

your name and saved to answer later and realized I had deleted it....not

intentionally.

> Anyway I'm not using prunes plus Miralax and that is where I will leave this

delicate subject.

> If I can be any help email me personally...

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

> Nasturtiums

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

>

> Re: Sher

>

> Oh Ms Sher,

>

> I forgot about prunes but they don't move me either! I need the senna. Seems

like my only alternative. LOL

>

> Be blessed,

> ette

> Northern Delaware

> SLE 99, TTP 99, Spine 98, PF noted 98, MS 04, AH/PBC 04, PF&PH 06, HS

09...???

>

> Sent from my Verizon Wireless BlackBerry

>

April 18, 2009

Aloha from Hawaii to all.

Also, ette you might try some Benefiber. It helps regulate.

Aloha,

Judy (OH) IPF 11/06 TX 8/07

>

> ette... have you ever tried Miralax???

> This is a pwdr supplement stirred into water or juice and taken each day. It

doesn't taste bad and I'm still working out the " results " . HAHAHAA

> sorry, I just couldn't resist.

>

> Now this stuff is for people like me who have impactions regularly. So far I

am doing ok...as I said, adjusting the amt used to get the best result.

> I should have responded to your email sent to my inbox but didn't recognize

your name and saved to answer later and realized I had deleted it....not

intentionally.

> Anyway I'm not using prunes plus Miralax and that is where I will leave this

delicate subject.

> If I can be any help email me personally...

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

> Nasturtiums

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

>

> Re: Sher

>

> Oh Ms Sher,

>

> I forgot about prunes but they don't move me either! I need the senna. Seems

like my only alternative. LOL

>

> Be blessed,

> ette

> Northern Delaware

> SLE 99, TTP 99, Spine 98, PF noted 98, MS 04, AH/PBC 04, PF&PH 06, HS

09...???

>

> Sent from my Verizon Wireless BlackBerry

>

April 22, 2009

Judy

so glad you got to go to Hawaii

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09 inactive 4/09

www.transplantfund.org---

Subject: Re: SherTo: Breathe-Support Date: Saturday, April 18, 2009, 11:32 PM

Aloha from Hawaii to all.Also, ette you might try some Benefiber. It helps regulate.Aloha,Judy (OH) IPF 11/06 TX 8/07>> ette... have you ever tried Miralax???> This is a pwdr supplement stirred into water or juice and taken each day. It doesn't taste bad and I'm still working out the "results". HAHAHAA> sorry, I just couldn't resist.> > Now this stuff is for people like me who have impactions regularly. So far I am doing ok...as I said, adjusting the amt used to get the best result. > I should have responded to your email sent to my inbox but didn't recognize your name and saved to answer later and realized I had deleted it....not intentionally.> Anyway I'm not using prunes plus Miralax and that is where I will

leave this delicate subject. > If I can be any help email me personally.. . > MamaSher; 70, IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > Re: Sher> > > > > > Oh Ms Sher,> > I forgot about prunes but they don't move me either! I need the senna. Seems like my only alternative. LOL> > Be blessed,> ette > Northern Delaware> SLE 99, TTP 99, Spine 98, PF noted 98, MS 04, AH/PBC 04, PF & PH 06, HS 09...???> > Sent from my Verizon Wireless

BlackBerry>

April 22, 2009

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

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 Sent: 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

April 24, 2009

Absolutely MB. I've been reading the posts, Sunny's and yours so I'm caught up on what is happening there w/her.

We sure do need to stick up for ourselves...and each other.

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

Update after pulmo doc - hate to even call him a doctor

Hi Everyone,

Just got home from pulmo dude. Refused to let me do 24 hour oximeter! My O2 at night is dropping to 83% so will go on night oxygen. So anyway I don't have IPF any more. Now it's just PF because they found out why my lungs are scarring so badly and why I can't breathe. I have Chronic Aspiration Neuritis (spell incorrectly I am sure). I am aspirating so much stomach contents that it is and has been scarring my lungs badly that's why I am down to 40% capacity. Pulmo doc says there are only two treatments: Raglan (which I am extremely allergic too) or surgery. He has referred me to gastro guy for surgery which in his words "is very intense". Anyone ever had or know anyone who has had this type of surgery. My gastro dude isn't back until Monday and I really want to know if they are going through my abdomen. or throat or where? I am so upset. How can there be only one drug to treat this? There are a hundred to treat everything else. Normal stain of stomach oil in lungs is about 55. Mine was 142. Doc says without the surgery my lungs will continue to deteriorate and I will get worse and worse. Said the pain in my chest is esophageal spasm and it hurts like a very bad word but there is nothing he can do about it. That's gastro guy's department. Believe it or not pulmo doc said "I just diagnose this I don't treat it." Go see gastro guy and come back to me in 2 months. & *^ & **** & ^^%^ & **!!!!! And that's how I feel about all of it.

Sunny, PF '09 & whatever else could possibly be wrong with the human body, Idaho

April 24, 2009

Absolutely MB. I've been reading the posts, Sunny's and yours so I'm caught up on what is happening there w/her.

We sure do need to stick up for ourselves...and each other.

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

Update after pulmo doc - hate to even call him a doctor

Hi Everyone,

Just got home from pulmo dude. Refused to let me do 24 hour oximeter! My O2 at night is dropping to 83% so will go on night oxygen. So anyway I don't have IPF any more. Now it's just PF because they found out why my lungs are scarring so badly and why I can't breathe. I have Chronic Aspiration Neuritis (spell incorrectly I am sure). I am aspirating so much stomach contents that it is and has been scarring my lungs badly that's why I am down to 40% capacity. Pulmo doc says there are only two treatments: Raglan (which I am extremely allergic too) or surgery. He has referred me to gastro guy for surgery which in his words "is very intense". Anyone ever had or know anyone who has had this type of surgery. My gastro dude isn't back until Monday and I really want to know if they are going through my abdomen. or throat or where? I am so upset. How can there be only one drug to treat this? There are a hundred to treat everything else. Normal stain of stomach oil in lungs is about 55. Mine was 142. Doc says without the surgery my lungs will continue to deteriorate and I will get worse and worse. Said the pain in my chest is esophageal spasm and it hurts like a very bad word but there is nothing he can do about it. That's gastro guy's department. Believe it or not pulmo doc said "I just diagnose this I don't treat it." Go see gastro guy and come back to me in 2 months. & *^ & **** & ^^%^ & **!!!!! And that's how I feel about all of it.

Sunny, PF '09 & whatever else could possibly be wrong with the human body, Idaho

April 24, 2009

Absolutely MB. I've been reading the posts, Sunny's and yours so I'm caught up on what is happening there w/her.

We sure do need to stick up for ourselves...and each other.

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

Update after pulmo doc - hate to even call him a doctor

Hi Everyone,

Just got home from pulmo dude. Refused to let me do 24 hour oximeter! My O2 at night is dropping to 83% so will go on night oxygen. So anyway I don't have IPF any more. Now it's just PF because they found out why my lungs are scarring so badly and why I can't breathe. I have Chronic Aspiration Neuritis (spell incorrectly I am sure). I am aspirating so much stomach contents that it is and has been scarring my lungs badly that's why I am down to 40% capacity. Pulmo doc says there are only two treatments: Raglan (which I am extremely allergic too) or surgery. He has referred me to gastro guy for surgery which in his words "is very intense". Anyone ever had or know anyone who has had this type of surgery. My gastro dude isn't back until Monday and I really want to know if they are going through my abdomen. or throat or where? I am so upset. How can there be only one drug to treat this? There are a hundred to treat everything else. Normal stain of stomach oil in lungs is about 55. Mine was 142. Doc says without the surgery my lungs will continue to deteriorate and I will get worse and worse. Said the pain in my chest is esophageal spasm and it hurts like a very bad word but there is nothing he can do about it. That's gastro guy's department. Believe it or not pulmo doc said "I just diagnose this I don't treat it." Go see gastro guy and come back to me in 2 months. & *^ & **** & ^^%^ & **!!!!! And that's how I feel about all of it.

Sunny, PF '09 & whatever else could possibly be wrong with the human body, Idaho

April 26, 2009

Sunny

Read this post yourself and see if you don't want to just scream out

" get another pulmonologist at a center specializing in ILD's. " He shows

no concern for your condition, no understanding of the disease. It's not

cancer after all, is his feeling expressed. Do something now....please.

To take any action or have any treatment or surgery based on anything he

said would terrify me. Yet, waiting longer would as well. Find and get

to someone now.

>

> Mama Sher,

>

> I hate to whine but I have had a major surgery every year for the past

4 so this will make 5 in 5 years. My pulmo dude said, and I quote: I

don't even give 24 oximeter to my end stage cancer patients. WHAT? I

will be seeing my GI guy next week and him I have had forever and trust

completely so I know he will give me the straight scoop. Pulmo doc said

that O2 falling to 83 is not a big deal and happens to a lot of people

and he couldn't justify putting me on daytime O2. As far as the 24 hour

test, he told me I could go buy one at REI if I was that concerned about

it. He also won't give me a perm. handicap placard and I can't

understand why. He keeps giving me temp ones. I would say 40% lung

capacity qualifies me for this at the very least. I can't walk far at

all without being short of breath. I also had a bad scare today. I bent

over and when I stood up my vision went dark and if my husband hadn't of

caught me I would have been down. Pulmo guy is also not concerned that

10 weeks ago I weighed 220 lbs at his office and yesterday I weighed in

on the same scale 175. That seems like a lot of weight to drop in a

very short time. When I mentioned that it worried me he said " water

weight probably " . I was floored. I had a complete hysto last year so I

can't imagine why I would retain 45 lbs of water. Can you? My husband

was so mad when we left I thought he was going to have a stroke. Pulmo

jerk's last words were to the effect that I was out of his hands now

since my lung problems are caused by a GI condition but if I get worse

symptoms I can call him in a couple of months. MB is right, I spelled

it wrong and she got it right. I was pretty flustered still when I sent

that e-mail. Plus pulmo jerk says the surgery is " Intense " but it

sounds pretty straight forward and safe to me. Oh and I asked him if he

had contacted my cardio doc since he said he was going to because of his

concern over my pulse rate. He said " No, didn't get to it but your rate

went down pretty quickly so I wouldn't worry about it. " First he says

it's a concern then he says it's not. All I know for sure is that I am

having my GI recommend a different pulmo doc. I saw the comprehensive

MRI report that said IPF and the biopsy results (done at a local small

lab) so I am fairly confident of that diagnoses. To be honest I am

scared - badly. I have a severely compromised immune system and because

of my Lupus no paid drugs work for me. I don't even bother with them

anymore and just deal with it. I wish I knew how much pain there is

going to be after the surgery and how long I can expect to be down.

Sorry for unloading, just very scared and depressed. And feel like I

have been treated like dirt from the first time I saw pulmo guy. I mean

seriously, he won't even make eye contact with me. Thank all you guys

for being there for me. Without your wisdom and support I would be even

more lost. Blessing to you all.

>

> Sunny PF 09, CAN 09, Lupus 05, Arthritis 05, Sjogrens 05, Diabetes 06,

Hyperthyroidism 07 and on and on, Idaho

> From: Sher Bauman

> Sent: Friday, April 24, 2009 1:46 PM

> To: Breathe-Support

> Subject: Re: Sher

>

> Absolutely MB. I've been reading the posts, Sunny's and yours so

I'm caught up on what is happening there w/her.

> We sure do need to stick up for ourselves...and each other.

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

> Nasturtiums

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

>

> Update after pulmo doc - hate to even

call him a doctor

>

> Hi Everyone,

>

> Just got home from pulmo dude. Refused to let me do 24 hour

oximeter! My O2 at night is dropping to 83% so will go on night oxygen.

So anyway I don't have IPF any more. Now it's just PF because they

found out why my lungs are scarring so badly and why I can't breathe. I

have Chronic Aspiration Neuritis (spell incorrectly I am sure). I am

aspirating so much stomach contents that it is and has been scarring my

lungs badly that's why I am down to 40% capacity. Pulmo doc says there

are only two treatments: Raglan (which I am extremely allergic too) or

surgery. He has referred me to gastro guy for surgery which in his

words " is very intense " . Anyone ever had or know anyone who has had

this type of surgery. My gastro dude isn't back until Monday and I

really want to know if they are going through my abdomen. or throat or

where? I am so upset. How can there be only one drug to treat this?

There are a hundred to treat everything else. Normal stain of stomach

oil in lungs is about 55. Mine was 142. Doc says without the surgery my

lungs will continue to deteriorate and I will get worse and worse. Said

the pain in my chest is esophageal spasm and it hurts like a very bad

word but there is nothing he can do about it. That's gastro guy's

department. Believe it or not pulmo doc said " I just diagnose this I

don't treat it. " Go see gastro guy and come back to me in 2 months.

&*^&****&^^%^&**!!!!! And that's how I feel about all of it.

>

> Sunny, PF '09 & whatever else could possibly be wrong with the

human body, Idaho

>

April 26, 2009

Mama Sher,

I agree with everyone and won't be seeing that person again. I do hate that because I have so many illness' I have a specialist for everything. Let's see, I have a cardiologist, pulmo, gastro, Spine/bone specialist, thyroid doctor, doctor for female stuff, urologist, rhumie, primary (who is fed up with me constantly being there, got to find a new one of those too), pain specialist, therapist, neurologist, if they have ology or ist in there title I have one. Today has been a bad day, as they afternoon and evening has progressed my chest pain has gotten worse and worse. I have been so dizzy and ditzy too. Pulmo jerk said the pain in my chest is esophageal (isn't my spelling atrocious and I went to UCLA) spasm and "yeah they are really painful". Oh thanks tons doc, think I'll sit in the corner and cry until the pain passes. What a * & *( & (* & & )(* & )(*^ & %*(%^ & (. Anyway I haven't been able to eat since Friday and ooh but I haven't gone to the bathroom except to potty in 10 days. Imagine how much more than 45 lbs I would have lost if I could go to the bathroom. I am having some extreme back pain as well. Don't know if I should be worried and don't want to go to ER although my husband is nagging and nagging. Me blacking out freaks him out for some reason. Sissy! Anyway I think I will just go to bed and maybe tomorrow will feel better. Just checked my O2 and it was 81 just sitting but I am panting a bit with pain. If I didn't know it was my lungs I would swear I am having another MI since the pain is going down my left arm and I am nauseas. But then again I am full of poo! I will persevere and get through this tonight and tomorrow will be better I know. With God on my side who can stand against me? And thank you all for listening to me snivel again.

Sunny, PF 09 Idaho

From: Sher Bauman

Sent: Sunday, April 26, 2009 9:56 AM

To: Breathe-Support

Subject: Re: Sher

Sunny....I think if I were you I would go to the ER before I would see that pulmojerk again. I've truly not heard of a dr who treats a patient as he has you.

You can get copies of chart notes from his office just by request and then will have the info. when you need it...

Since you have confidence in your GI guy, then start there and have him make a referral or suggestion.

Of course you're scared and depressed. With no direct compassion/treatment/feedback from the pulmojerk what else could you feel?

I can't remember all the details, sorry, but do you have a pcp you like?

Seems like there was a problem w pcp but I get info mixed up w so many newbies.

I wish I could be more help, I'm certainly feeling your frustration.

A pulmo probably won't treat the Lupus anyway. We are in a world of 'specialists' now. Nearly everything is a different dr.

Hang on,

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

Update after pulmo doc - hate to even call him a doctor

Hi Everyone,

Just got home from pulmo dude. Refused to let me do 24 hour oximeter! My O2 at night is dropping to 83% so will go on night oxygen. So anyway I don't have IPF any more. Now it's just PF because they found out why my lungs are scarring so badly and why I can't breathe. I have Chronic Aspiration Neuritis (spell incorrectly I am sure). I am aspirating so much stomach contents that it is and has been scarring my lungs badly that's why I am down to 40% capacity. Pulmo doc says there are only two treatments: Raglan (which I am extremely allergic too) or surgery. He has referred me to gastro guy for surgery which in his words "is very intense". Anyone ever had or know anyone who has had this type of surgery. My gastro dude isn't back until Monday and I really want to know if they are going through my abdomen. or throat or where? I am so upset. How can there be only one drug to treat this? There are a hundred to treat everything else. Normal stain of stomach oil in lungs is about 55. Mine was 142. Doc says without the surgery my lungs will continue to deteriorate and I will get worse and worse. Said the pain in my chest is esophageal spasm and it hurts like a very bad word but there is nothing he can do about it. That's gastro guy's department. Believe it or not pulmo doc said "I just diagnose this I don't treat it." Go see gastro guy and come back to me in 2 months. & *^ & **** & ^^%^ & **!!!!! And that's how I feel about all of it.

Sunny, PF '09 & whatever else could possibly be wrong with the human body, Idaho

April 27, 2009

Sunny,

Well this is more than 7 hours after your last post....if I had seen it last night I would have told you to get to the emergency room. Chest pain, back pain, left arm pain and sats in the low 80's,

2+2 still equals 4 in my experience and the ER is the best place to rule out an MI.

Please stop saying that you are whining or sniveling. You are suffering from some serious, life threatening illnesses. We all take you seriously and support you 100%.

I hope things are better this morning. Please don't let another day go by like yesterday. If you continue to have pain like that, get yourself seen by a physician today!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Monday, April 27, 2009 12:26:08 AMSubject: Re: Sher

Mama Sher,

I agree with everyone and won't be seeing that person again. I do hate that because I have so many illness' I have a specialist for everything. Let's see, I have a cardiologist, pulmo, gastro, Spine/bone specialist, thyroid doctor, doctor for female stuff, urologist, rhumie, primary (who is fed up with me constantly being there, got to find a new one of those too), pain specialist, therapist, neurologist, if they have ology or ist in there title I have one. Today has been a bad day, as they afternoon and evening has progressed my chest pain has gotten worse and worse. I have been so dizzy and ditzy too. Pulmo jerk said the pain in my chest is esophageal (isn't my spelling atrocious and I went to UCLA) spasm and "yeah they are really painful". Oh thanks tons doc, think I'll sit in the corner and cry until the pain passes. What a

* & *( & (* & & )(* & )(*^ & %*(%^ & (. Anyway I haven't been able to eat since Friday and ooh but I haven't gone to the bathroom except to potty in 10 days. Imagine how much more than 45 lbs I would have lost if I could go to the bathroom. I am having some extreme back pain as well. Don't know if I should be worried and don't want to go to ER although my husband is nagging and nagging. Me blacking out freaks him out for some reason. Sissy! Anyway I think I will just go to bed and maybe tomorrow will feel better. Just checked my O2 and it was 81 just sitting but I am panting a bit with pain. If I didn't know it was my lungs I would swear I am having another MI since the pain is going down my left arm and I am nauseas. But then again I am full of poo! I will persevere and get through this tonight and tomorrow will be better I know. With God on my side who can stand

against me? And thank you all for listening to me snivel again.

Sunny, PF 09 Idaho

From: Sher Bauman

Sent: Sunday, April 26, 2009 9:56 AM

To: Breathe-Support@ yahoogroups. com

Subject: Re: Sher

Sunny....I think if I were you I would go to the ER before I would see that pulmojerk again. I've truly not heard of a dr who treats a patient as he has you.

You can get copies of chart notes from his office just by request and then will have the info. when you need it...

Since you have confidence in your GI guy, then start there and have him make a referral or suggestion.

Of course you're scared and depressed. With no direct compassion/treatmen t/feedback from the pulmojerk what else could you feel?

I can't remember all the details, sorry, but do you have a pcp you like?

Seems like there was a problem w pcp but I get info mixed up w so many newbies.

I wish I could be more help, I'm certainly feeling your frustration.

A pulmo probably won't treat the Lupus anyway. We are in a world of 'specialists' now. Nearly everything is a different dr.

Hang on,

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

Update after pulmo doc - hate to even call him a doctor

Hi Everyone,

Just got home from pulmo dude. Refused to let me do 24 hour oximeter! My O2 at night is dropping to 83% so will go on night oxygen. So anyway I don't have IPF any more. Now it's just PF because they found out why my lungs are scarring so badly and why I can't breathe. I have Chronic Aspiration Neuritis (spell incorrectly I am sure). I am aspirating so much stomach contents that it is and has been scarring my lungs badly that's why I am down to 40% capacity. Pulmo doc says there are only two treatments: Raglan (which I am extremely allergic too) or surgery. He has referred me to gastro guy for surgery which in his words "is very intense". Anyone ever had or know anyone who has had this type of surgery. My gastro dude isn't back until Monday and I really want to know if they are going through my abdomen. or throat or where? I am so upset. How can there be only

one drug to treat this? There are a hundred to treat everything else. Normal stain of stomach oil in lungs is about 55. Mine was 142. Doc says without the surgery my lungs will continue to deteriorate and I will get worse and worse. Said the pain in my chest is esophageal spasm and it hurts like a very bad word but there is nothing he can do about it. That's gastro guy's department. Believe it or not pulmo doc said "I just diagnose this I don't treat it." Go see gastro guy and come back to me in 2 months. & *^ & **** & ^^%^ & **!!!!! And that's how I feel about all of it.

Sunny, PF '09 & whatever else could possibly be wrong with the human body, Idaho

April 28, 2009

Mama Sher,

You probably won't get this until tomorrow but I am sorry I unloaded on you. We just got back from the ER so I am a little bit "happy" right now. No pain at all! The did an NG tube in my nose down to my stomach and poured in 2 gallons of Ultra Go Lightly. Thankfully they drugged me up really good first. I am now all nice and cleaned out. They were worried because my O2 was low, pulse was too high, potassium was too low, iron was too low; oh well you get the picture. I was terribly dehydrated so I am sure that was most of the problem. When I first got there I had an irregular heart beat but by the time I left everything was pretty settled down. Of course I left with a handful of scripts but I was just thankful to leave because the doctor was insisting that he admit me but I told him that I honestly could not afford it and promised to follow his instructions to the letter and see my doctor tomorrow. Actually won't see GI until Wed. afternoon but close enough. I have to go see my primary because my blood sugar was high. That seems weird since I haven't been eating but I guess it's not unusual. I did want to tell you that Lupus can cause your veins to be very leathery and hard to get a needle in. Last surgery I had they poked me 12 times before finally going in my foot which they hate to do because of infection risk. Luckily this time it was only 6 pokes before they got the IV in. Now, my plan: 1st quit feeling sorry for myself, 2nd get references, recommendations ect... and find a new GP to oversee my total care, 3rd find a new pulmonologist, 4th start taking better care of my body and 5th start opening my mouth and letting doctors know exactly how I feel. I tend to be overawed or scared when I am in their office and don't argue or ask questions. That is going to change now! Thanks to everyone who said ER. It was exactly the right thing to do. When I talked to my GI he told me to go directly to the ER. Sometimes I am very thick headed. Joyce you are exactly right. Rich makes too much money for us to get state help, I am waiting on SSDI and every place I have called for help says no because we have insurance. If we didn't we could get all kinds of help. Seems like they would want to help those that they only had to pay part of the cost. If Rich quit working we could also get tons of help but that will never happen. It seems a shame that in our country the folks who really try are the ones who get shafted. I have a very hard time with the fact that I have to fight for my SSI. I was widowed young with three small daughters but didn't go on welfare. I worked and put myself through college and received a degree in Business Management. I wanted to be able to make enough to give them everything. I ended up as an underwriter for a very large insurer making major money so the loss of the ability to work and bring home a paycheck has been pretty hard on me. That SSDI money is mine. I paid it in for over 20 years and now have to fight to get it. Very sad! But I have realized that I had way too much of my self esteem tied in to my job and paycheck. I have to find the value in myself that has nothing to do with my education and job skills. That is a major part of my depression, feeling worthless and useless but I AM NOT! I am a Saint and Daughter of the King. God loves me and knows exactly what's going on and will pull me through. Goodness I am woozy and rambling so I will shut up for now and go to bed before I fall asleep at the keyboard. Love all of you guys and appreciate your caring and don't mind a bit if I need my backside chewed out to set me straight.

Sunny

From: Sher Bauman

Sent: Monday, April 27, 2009 6:53 PM

To: Breathe-Support

Subject: Re: Sher

Sunny...oh my goodness. I overstepped my bounds. I apologize to you. Perhaps it helps to 'unload' and it's ok. I understand because I live the same thing. Overwhelming medical bills and Rx that are so high I fell in the donut hole last year and then had to pay 100% for all RX.

I apologize for 'sounding strange' to you. I was feeling great concern for you and yes, trying my best to prompt you to go to the ER for medical attention.

Bruce and MB both said the same thing but perhaps in a more accepting way. I am known for being outspoken. We sometimes don't have time for chit-chat when there is an emergency and I think you do need immediate care. You are worth that.

I do think you are overwhelmed as any of us would be in your same situation and you owe me nor anyone else an explanation of your personal life.

I want good care for you in this post as I did in my last post.

God Bless you.

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

Update after pulmo doc - hate to even call him a doctor

Hi Everyone,

Just got home from pulmo dude. Refused to let me do 24 hour oximeter! My O2 at night is dropping to 83% so will go on night oxygen. So anyway I don't have IPF any more. Now it's just PF because they found out why my lungs are scarring so badly and why I can't breathe. I have Chronic Aspiration Neuritis (spell incorrectly I am sure). I am aspirating so much stomach contents that it is and has been scarring my lungs badly that's why I am down to 40% capacity. Pulmo doc says there are only two treatments: Raglan (which I am extremely allergic too) or surgery. He has referred me to gastro guy for surgery which in his words "is very intense". Anyone ever had or know anyone who has had this type of surgery. My gastro dude isn't back until Monday and I really want to know if they are going through my abdomen. or throat or where? I am so upset. How can there be only one drug to treat this? There are a hundred to treat everything else. Normal stain of stomach oil in lungs is about 55. Mine was 142. Doc says without the surgery my lungs will continue to deteriorate and I will get worse and worse. Said the pain in my chest is esophageal spasm and it hurts like a very bad word but there is nothing he can do about it. That's gastro guy's department. Believe it or not pulmo doc said "I just diagnose this I don't treat it." Go see gastro guy and come back to me in 2 months. & *^ & **** & ^^%^ & **!!!!! And that's how I feel about all of it.

Sunny, PF '09 & whatever else could possibly be wrong with the human body, Idaho

April 28, 2009

Sunny.... I am so relieved to find your post this morning saying you went to the ER! And I'm glad you're a 'little bit happy' too...

I do get the picture of the problems you were having...thus the urgency to go to ER.

Do you not have any insurance to cover hospitalization...especially under 'emergency admittance'?

I truly did not know (obviously) that Lupus makes it harder to get an IV in. Thanks for the information. My grmother/mother both had Lupus and they never mentioned it. Of course that was many years ago.

I get the same put-off. Our income is barely above poverty level but it's still too much to qualify for the help I need. I understand the battle between finance/needs. Each Govt program has it's own guidelines and most always we fall between the cracks.

I understand too about self esteem being tied into what we 'do'. I battled with that for about 3 years after I had to stop working....If I didn't work I thought I wasn't worth anything. Of course now I know that is just not true. For you either.

We have value, worth and dignity no matter what we do or don't do.

Truly, you and I are not the only ones who are living tight. There are others here on the board who have financial problems too.

So did you come home knowing what is causing what you are going through?

Your new resolutions sound just great.

Keep on keepin' on Sunny.

hugs

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

Update after pulmo doc - hate to even call him a doctor

Hi Everyone,

Just got home from pulmo dude. Refused to let me do 24 hour oximeter! My O2 at night is dropping to 83% so will go on night oxygen. So anyway I don't have IPF any more. Now it's just PF because they found out why my lungs are scarring so badly and why I can't breathe. I have Chronic Aspiration Neuritis (spell incorrectly I am sure). I am aspirating so much stomach contents that it is and has been scarring my lungs badly that's why I am down to 40% capacity. Pulmo doc says there are only two treatments: Raglan (which I am extremely allergic too) or surgery. He has referred me to gastro guy for surgery which in his words "is very intense". Anyone ever had or know anyone who has had this type of surgery. My gastro dude isn't back until Monday and I really want to know if they are going through my abdomen. or throat or where? I am so upset. How can there be only one drug to treat this? There are a hundred to treat everything else. Normal stain of stomach oil in lungs is about 55. Mine was 142. Doc says without the surgery my lungs will continue to deteriorate and I will get worse and worse. Said the pain in my chest is esophageal spasm and it hurts like a very bad word but there is nothing he can do about it. That's gastro guy's department. Believe it or not pulmo doc said "I just diagnose this I don't treat it." Go see gastro guy and come back to me in 2 months. & *^ & **** & ^^%^ & **!!!!! And that's how I feel about all of it.

Sunny, PF '09 & whatever else could possibly be wrong with the human body, Idaho

April 28, 2009