Re: Caro

June 6, 2008

Where can you find that? Do you have to get it at a health food store or GNC maybe? I live in a small town of about 18,000 and usually if Wal-mart doesn't have it, nobody does. I could check out some stores when I go to Birmingham next week, though, or maybe I could buy it online? I am willing to try anything pretty much at this point.

Thanks for the help!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

From: STEPHEN R WILSON <svwilsonmsn (DOT) com>Subject: RE: Hi allTo: Breathe-Support@ yahoogroups. comDate: Friday, June 6, 2008, 8:58 PM

Hi Caro, I have the constipation controlled with dried plums and over the counter dulcolax. I only have problem now when on antibiotics. Oops forgot i take aricept(for Alzheimers) which also helps the constipation problem. Bruising- yes seems like I stumble into a mattress and it bruises. Some times I am black and blue from bumping unknown objects. The full dose Requip has controlled my rls and leg pain. I am still looking for a better anti depressant so am dissapointed the cymbalta isn't helping you yet. All in all life is better right now if the sun would just shine again. I'm sure things will be better for you too.

Steve 60 from WA IPF 2006 Parkinsons 2008

Alzheimers 2008

From: "carowade4444" <carowade4444@ yahoo.com>Reply-To: Breathe-Support@ yahoogroups. comTo: Breathe-Support@ yahoogroups. comSubject: Hi allDate: Sat, 07 Jun 2008 00:34:04 -0000

Well have been away for a bit. Not having a good day today. Am sinking more and more into depression I fear. Since starting prednisone, I have now gained 15 pounds and still rising. No matter what I do, the scales still go up. Have started pulmo rehab, exercising more, eating healthy, still gaining weight. Just tapered the dose down from 30 mg to 20 mg on the first of June, so I am REALLY hoping that will help with the weight. I can't wear any of my summer clothes. Birmingham for me is a week from Monday, appointment is Tuesday morning the 17th. I can't believe it is here already. I am so nervous. I wish it was over. I am so tired all the time. Today was just a BLAH day. I have done good just to make it through the day. I so hate this disease. Having terrible constipation, too. Have never had it this bad in my life until this year. I feel like I am becoming laxative addicted and that scares me, too.

Has anyone else had this problem with prednisone and Imuran? I have started on Cymbalta 60 mg for the neuropathic pain from my back and the restless legs and she said it is supposed to help with the depression, but I can't tell it. I have been on that since April, too. I do feel like it is helping with the neuropathic pain and the restless legs, but I don't feel any help with the depression. I feel like I am wallowing in a pity pot, because so many of you have it so worse than me. My sats dropped again today at pulmo rehab but not bad enough to be worried. She said we are moving up to level 4 next week on the exercises next week so that will be more strain on the body. I have bruises all over my legs from doing the workouts. I can just bump something and my leg turns black and blue. I look like somebody beat the crap out of me. My stomach is distended and I look like I am 6 months pregnant, too.

Ok, I guess that is enough Woe is me for today. Haven't meant to be hiding out. I have still been reading posts everyday. I haven't forgotten anyone, I have just been wallowing --Caro

June 6, 2008

Hi Caro,

With the constipation, you can try to buy a Stool Softener (it's not a laxative), it's called Colace, it might

have a different name in the US, here it's over the counter. It's little jelly-like capsules....

They were giving me that twice a day, to make my bowels move, after my bowel obstruction got better. Laxatives

aren't good for me to take, they create more problems than they solve.....

You can try to eat a lot of foods that contain fibre. For me, I cannot take any foods containing fibre because it

will cause a lot of diarrhea and flare-ups of Crohn's Disease.

At the hospital they gave me a diet...for the days when I'm feeling better or not and what to do

For the days I'm feeling better:

-eat at least 5 servings of fruits and vegetables

-4 tablespoons of natural bran

-2-3 rounded teaspoons of a fibre supplement such as Metamucil or Prodiem Plain

-1/2 cup of a very high-fibre cereal such as All Brand, 100% Bran or bran Buds with psyllium

I Hope this helps a little!

Hugs Irene

PF 03/07 Raynaud's Disease 09/07

Crohn's Disease 03/95

Hi allDate: Sat, 07 Jun 2008 00:34:04 -0000

Well have been away for a bit. Not having a good day today. Am sinking more and more into depression I fear. Since starting prednisone, I have now gained 15 pounds and still rising. No matter what I do, the scales still go up. Have started pulmo rehab, exercising more, eating healthy, still gaining weight. Just tapered the dose down from 30 mg to 20 mg on the first of June, so I am REALLY hoping that will help with the weight. I can't wear any of my summer clothes. Birmingham for me is a week from Monday, appointment is Tuesday morning the 17th. I can't believe it is here already. I am so nervous. I wish it was over. I am so tired all the time. Today was just a BLAH day. I have done good just to make it through the day. I so hate this disease. Having terrible constipation, too. Have never had it this bad in my life until this year. I feel like I am becoming laxative addicted and that scares me, too.

Has anyone else had this problem with prednisone and Imuran? I have started on Cymbalta 60 mg for the neuropathic pain from my back and the restless legs and she said it is supposed to help with the depression, but I can't tell it. I have been on that since April, too. I do feel like it is helping with the neuropathic pain and the restless legs, but I don't feel any help with the depression. I feel like I am wallowing in a pity pot, because so many of you have it so worse than me. My sats dropped again today at pulmo rehab but not bad enough to be worried. She said we are moving up to level 4 next week on the exercises next week so that will be more strain on the body. I have bruises all over my legs from doing the workouts. I can just bump something and my leg turns black and blue. I look like somebody beat the crap out of me. My stomach is distended and I look like I am 6 months pregnant, too.

Ok, I guess that is enough Woe is me for today. Haven't meant to be hiding out. I have still been reading posts everyday. I haven't forgotten anyone, I have just been wallowing --Caro

Looking for the perfect gift? Give the gift of Flickr!

June 6, 2008

Caro, It should be in the refridgerated section of a natural food store, maybe GNC. Here I find it easily at a Supermarket called Whole Foods. I only by the ones with the seal USDA. It is stored in refrigegerator always. Also it is always in a dark container. If you buy do not switch the container. It is protected from light that way. Best quality are from pressed seeds. Read labels. Consult your doctor also. Although it is an oil and edible somethings interfear with meds, so always ask. Good idea ! I never buy capsules of anything unless my Doc says. The pure organic oil is better.

God Bless !!

dragonflymcs

Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14

< Click on me !!

Hi allDate: Sat, 07 Jun 2008 00:34:04 -0000

Well have been away for a bit. Not having a good day today. Am sinking more and more into depression I fear. Since starting prednisone, I have now gained 15 pounds and still rising. No matter what I do, the scales still go up. Have started pulmo rehab, exercising more, eating healthy, still gaining weight. Just tapered the dose down from 30 mg to 20 mg on the first of June, so I am REALLY hoping that will help with the weight. I can't wear any of my summer clothes. Birmingham for me is a week from Monday, appointment is Tuesday morning the 17th. I can't believe it is here already. I am so nervous. I wish it was over. I am so tired all the time. Today was just a BLAH day. I have done good just to make it through the day. I so hate this disease. Having terrible constipation, too. Have never had it this bad in my life until this year. I feel like I am becoming laxative addicted and that scares me, too.

Has anyone else had this problem with prednisone and Imuran? I have started on Cymbalta 60 mg for the neuropathic pain from my back and the restless legs and she said it is supposed to help with the depression, but I can't tell it. I have been on that since April, too. I do feel like it is helping with the neuropathic pain and the restless legs, but I don't feel any help with the depression. I feel like I am wallowing in a pity pot, because so many of you have it so worse than me. My sats dropped again today at pulmo rehab but not bad enough to be worried. She said we are moving up to level 4 next week on the exercises next week so that will be more strain on the body. I have bruises all over my legs from doing the workouts. I can just bump something and my leg turns black and blue. I look like somebody beat the crap out of me. My stomach is distended and I look like I am 6 months pregnant, too.

Ok, I guess that is enough Woe is me for today. Haven't meant to be hiding out. I have still been reading posts everyday. I haven't forgotten anyone, I have just been wallowing --Caro

June 7, 2008

hi

i buy flaxseeds and grind them and put them on my oatmeal, fruit as

well as using it as a thickener for soups and casseroles. ive grown

to love the nutty taste of it. one tablespoon a day. full of fibre,

and omega's which will also help with mood.

may

>

> From: STEPHEN R WILSON <svwilsonmsn (DOT) com>

> Subject: RE: Hi all

> To: Breathe-Support@ yahoogroups. com

> Date: Friday, June 6, 2008, 8:58 PM

>

> Hi Caro, I have the constipation controlled with dried plums and

over the counter dulcolax. I only have problem now when on

antibiotics. Oops forgot i take aricept(for Alzheimers) which also

helps the constipation problem. Bruising- yes seems like I stumble

into a mattress and it bruises. Some times I am black and blue from

bumping unknown objects. The full dose Requip has controlled my rls

and leg pain. I am still looking for a better anti depressant so am

dissapointed the cymbalta isn't helping you yet. All in all life is

better right now if the sun would just shine again. I'm sure things

will be better for you too.

>

> Steve 60 from WA

> IPF 2006 Parkinsons 2008

> Alzheimers 2008

>

> ________________________________

> From: " carowade4444 " <carowade4444@ yahoo.com>

> Reply-To: Breathe-Support@ yahoogroups. com

> To: Breathe-Support@ yahoogroups. com

> Subject: Hi all

> Date: Sat, 07 Jun 2008 00:34:04 -0000

>

> Well have been away for a bit. Not having a good day today. Am

> sinking more and more into depression I fear. Since starting

> prednisone, I have now gained 15 pounds and still rising. No matter

> what I do, the scales still go up. Have started pulmo rehab,

> exercising more, eating healthy, still gaining weight. Just tapered

> the dose down from 30 mg to 20 mg on the first of June, so I am

> REALLY hoping that will help with the weight. I can't wear any of

my

> summer clothes. Birmingham for me is a week from Monday,

appointment

> is Tuesday morning the 17th. I can't believe it is here already. I

> am so nervous. I wish it was over. I am so tired all the time.

> Today was just a BLAH day. I have done good just to make it through

> the day. I so hate this disease. Having terrible constipation,

> too. Have never had it this bad in my life until this year. I feel

> like I am becoming laxative addicted and that scares me, too. Has

> anyone else had this problem with prednisone and Imuran? I have

> started on Cymbalta 60 mg for the neuropathic pain from my back and

> the restless legs and she said it is supposed to help with the

> depression, but I can't tell it. I have been on that since April,

> too. I do feel like it is helping with the neuropathic pain and

> the restless legs, but I don't feel any help with the depression. I

> feel like I am wallowing in a pity pot, because so many of you have

> it so worse than me. My sats dropped again today at pulmo rehab but

> not bad enough to be worried. She said we are moving up to level 4

> next week on the exercises next week so that will be more strain on

> the body. I have bruises all over my legs from doing the workouts.

> I can just bump something and my leg turns black and blue. I look

> like somebody beat the crap out of me. My stomach is distended and

I

> look like I am 6 months pregnant, too.

>

> Ok, I guess that is enough Woe is me for today. Haven't meant to be

> hiding out. I have still been reading posts everyday. I haven't

> forgotten anyone, I have just been wallowing --

>

> Caro

>

June 19, 2008

Thanks Beth. Yes, I do consider myself a lucky duck not being on O2 yet!! I feel the way I am progressing, though, that more than likely it will happen within the next year, at least that is the way my body feels anyway. I am trying to stay active but some days the old body just won't cooperate. Am kinda tired today now after working all day. Was on top of the world earlier in the day. Now am exhausted. Maybe it was the 10 tubes of blood they took Monday afternoon and they haven't replenished yet? I tried to take it easy yesterday, but have really busted it today trying to get all the typing I could get in, plus my 9-year-old grandson has been here all day and we went to the park this morning and walked 1 mile, AND he wanted to get into the pool for an hour and a half this afternoon, so we did that,

too. I was wanting to try and walk another mile after work, but I am really tired now. Maybe I will rest a bit and then try and go. Will see what happens.

Thanks for all the info on the PH. Makes me wonder if it usually occurs later in the process, could that mean I am possibly later than they thought? I surely hope not, but guess I won't know until the results come back. I SOOOO HATE WAITING!!! I am probably one of THE most impatient people in the world when it comes to waiting for results!!

CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

From: Jane <jjarrettoptilink (DOT) us>Subject: Re: BirminghamTo: Breathe-Support@ yahoogroups. comDate: Thursday, June 19, 2008, 7:50 AM

Caro,

Sounds as if you found good docs in B'ham. I am concerned that they say it is rare for anyone under the age of 50 to have IPF. I first had symptoms in my early forties and now I am 53.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>> Hi All,> > Sorry I haven't posted in a few days again, but I am back from > Birmingham. Still don't know anything definite other than the > diagnosis I already have of UIP. First when I got there, they did > ABGs (OMG!! It hurt so bad!! I had it done once before and I didn't > even feel it, but not this time. She had to pry (her words)). Then > I had to do PFTs, which showed 57% lung function, compared to the 68% > I had in December. Next, I visited with the doc. Actually there > were 2 docs. The first one was a fellow of Dr. de Andrade (who was > the Assistant Professor). His name was Dr. , very nice guy. > He took down all my history and said he thinks I may have pulmonary > hypertension (which would explain the rapid heart rate). He did exam >

and then goes to discuss with Dr. de Andrade, who comes back in and > again, very nice guy. He explains that it is very rare in a woman > under the age of 50 to have pulmonary fibrosis and since I have been > sick for 6 years already, even more rare, not unheard of, just rare. > So I am a model case!! Anyhoo, due to this fact that I AM so rare, > he thinks there is an underlying disease causing the PF, so I get > blood work (10 tubes of blood) for various autoimmune diseases. He > is leaning towards Sjogren's or scleroderma (mostly scleroderma for > which also there is no cure). Dr. did a heart exam and looked > at the veins in my neck before talking to Dr. de Andrade who decided > I needed another chest CT (my last one was in February 2008), so I > had that done (without contrast thank God!!) and also that I needed > an ultrasound of my heart to check for blood

flow to the heart and > for any blockages to the valves. All in all, he said if I don't hear > from them in a week, to call them to get the results. Other than > that, he didn't change any of my medications, except to decrease the > prednisone even further to 10 mg a day. He said he wants me to get > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I > told him I had gained 20 pounds since being on them starting in > January, and told him I have moon faces and he agreed. He said they > want me lean and healthy and I did not need to be on that for sure. > Any weight gain is out of the question, he said. He told me I have > to keep moving. He told me to eat lean proteins, fruits, and veggies > and no snacks. He PROMISED me the weight will come off. He said he > expects me to lose 10 pounds rather quickly. I sure hope he is > right, because I am

miserable and I told him so, too!! He said there > are no real medications to treat PF, and I knew that, but he said > when I come back, I can decide either to go with the Imuran and N-> Acetyl-Cysteine (NAC), which is all the best they know at this point > to give patients with PF, or I can try an experimental drug (clinical > trial), which I don't know what the side effects will be, but I am > kinda leaning towards doing anyway, because I feel like even if it > doesn't help me, it may help some other person with this stupid > disease on down the road and it would be worth it. As for lung > transplant, I don't yet qualify because my sats are not low enough > and I am not on oxygen yet. Note that I said "YET." He said the key > to prolonging oxygen use as long as possible is to stay as active and > healthy as possible and that is what I am going to try and do. >

(my grandson) is here with me this summer, and he really > helps to keep me motivated and I think I need that right now. Also > the docs were really glad to know that I am in pulmonary rehab and > that I am going to stay in the Wellness Program when I get done with > the rehab program. All in all, even though I did get some not so > good news, I feel like I got some good news, also, so until next week > or whenever I get the results, I am just trying to keep my self in > exercise and health mode the best I can and keep going.> > So that was my Birmingham visit. My parents went with me and we > really had a nice trip. I don't know what I would do without them. > They have been my rock through all of this. Thank God for my Mama > and Daddy!!> > I hope you all have a great week and now that I am back I hope to be > able to keep up with posts

better and write more than I have been. I > do reads all the posts and think of each and every one of you > everyday. You are my air family and you are my rock, as well. Don't > know what I would do without you guys, either!! I love you all!!> > Have a great day!!> > Caro>

June 19, 2008

Thanks Beth. Yes, I do consider myself a lucky duck not being on O2 yet!! I feel the way I am progressing, though, that more than likely it will happen within the next year, at least that is the way my body feels anyway. I am trying to stay active but some days the old body just won't cooperate. Am kinda tired today now after working all day. Was on top of the world earlier in the day. Now am exhausted. Maybe it was the 10 tubes of blood they took Monday afternoon and they haven't replenished yet? I tried to take it easy yesterday, but have really busted it today trying to get all the typing I could get in, plus my 9-year-old grandson has been here all day and we went to the park this morning and walked 1 mile, AND he wanted to get into the pool for an hour and a half this afternoon, so we did that,

too. I was wanting to try and walk another mile after work, but I am really tired now. Maybe I will rest a bit and then try and go. Will see what happens.

Thanks for all the info on the PH. Makes me wonder if it usually occurs later in the process, could that mean I am possibly later than they thought? I surely hope not, but guess I won't know until the results come back. I SOOOO HATE WAITING!!! I am probably one of THE most impatient people in the world when it comes to waiting for results!!

CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

From: Jane <jjarrettoptilink (DOT) us>Subject: Re: BirminghamTo: Breathe-Support@ yahoogroups. comDate: Thursday, June 19, 2008, 7:50 AM

Caro,

Sounds as if you found good docs in B'ham. I am concerned that they say it is rare for anyone under the age of 50 to have IPF. I first had symptoms in my early forties and now I am 53.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>> Hi All,> > Sorry I haven't posted in a few days again, but I am back from > Birmingham. Still don't know anything definite other than the > diagnosis I already have of UIP. First when I got there, they did > ABGs (OMG!! It hurt so bad!! I had it done once before and I didn't > even feel it, but not this time. She had to pry (her words)). Then > I had to do PFTs, which showed 57% lung function, compared to the 68% > I had in December. Next, I visited with the doc. Actually there > were 2 docs. The first one was a fellow of Dr. de Andrade (who was > the Assistant Professor). His name was Dr. , very nice guy. > He took down all my history and said he thinks I may have pulmonary > hypertension (which would explain the rapid heart rate). He did exam >

and then goes to discuss with Dr. de Andrade, who comes back in and > again, very nice guy. He explains that it is very rare in a woman > under the age of 50 to have pulmonary fibrosis and since I have been > sick for 6 years already, even more rare, not unheard of, just rare. > So I am a model case!! Anyhoo, due to this fact that I AM so rare, > he thinks there is an underlying disease causing the PF, so I get > blood work (10 tubes of blood) for various autoimmune diseases. He > is leaning towards Sjogren's or scleroderma (mostly scleroderma for > which also there is no cure). Dr. did a heart exam and looked > at the veins in my neck before talking to Dr. de Andrade who decided > I needed another chest CT (my last one was in February 2008), so I > had that done (without contrast thank God!!) and also that I needed > an ultrasound of my heart to check for blood

flow to the heart and > for any blockages to the valves. All in all, he said if I don't hear > from them in a week, to call them to get the results. Other than > that, he didn't change any of my medications, except to decrease the > prednisone even further to 10 mg a day. He said he wants me to get > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I > told him I had gained 20 pounds since being on them starting in > January, and told him I have moon faces and he agreed. He said they > want me lean and healthy and I did not need to be on that for sure. > Any weight gain is out of the question, he said. He told me I have > to keep moving. He told me to eat lean proteins, fruits, and veggies > and no snacks. He PROMISED me the weight will come off. He said he > expects me to lose 10 pounds rather quickly. I sure hope he is > right, because I am

miserable and I told him so, too!! He said there > are no real medications to treat PF, and I knew that, but he said > when I come back, I can decide either to go with the Imuran and N-> Acetyl-Cysteine (NAC), which is all the best they know at this point > to give patients with PF, or I can try an experimental drug (clinical > trial), which I don't know what the side effects will be, but I am > kinda leaning towards doing anyway, because I feel like even if it > doesn't help me, it may help some other person with this stupid > disease on down the road and it would be worth it. As for lung > transplant, I don't yet qualify because my sats are not low enough > and I am not on oxygen yet. Note that I said "YET." He said the key > to prolonging oxygen use as long as possible is to stay as active and > healthy as possible and that is what I am going to try and do. >

(my grandson) is here with me this summer, and he really > helps to keep me motivated and I think I need that right now. Also > the docs were really glad to know that I am in pulmonary rehab and > that I am going to stay in the Wellness Program when I get done with > the rehab program. All in all, even though I did get some not so > good news, I feel like I got some good news, also, so until next week > or whenever I get the results, I am just trying to keep my self in > exercise and health mode the best I can and keep going.> > So that was my Birmingham visit. My parents went with me and we > really had a nice trip. I don't know what I would do without them. > They have been my rock through all of this. Thank God for my Mama > and Daddy!!> > I hope you all have a great week and now that I am back I hope to be > able to keep up with posts

better and write more than I have been. I > do reads all the posts and think of each and every one of you > everyday. You are my air family and you are my rock, as well. Don't > know what I would do without you guys, either!! I love you all!!> > Have a great day!!> > Caro>

June 19, 2008

Caro,

I doubt that you're further along than they thought. Mainly cause you haven't needed supplemental O2 yet. I don't have it yet and I was diagnosed 2 years ago and have been on O2 ever since. The results of the ultrasound will tell you what you need to know. I wouldn't worry alot about it, just wait and see.

With all you did today, you'd have to be Wonder Woman not to be tired. I babysat for my two nieces today, walked 45 minutes on the treadmill then came home and did three loads of laundry, took a shower and I'm pooped!

I'm no better at waiting than you are....patience is not one of my attributes!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: BirminghamTo: Breathe-Support@ yahoogroups. comDate: Thursday, June 19, 2008, 7:50 AM

Caro,

Sounds as if you found good docs in B'ham. I am concerned that they say it is rare for anyone under the age of 50 to have IPF. I first had symptoms in my early forties and now I am 53.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>> Hi All,> > Sorry I haven't posted in a few days again, but I am back from > Birmingham. Still don't know anything definite other than the > diagnosis I already have of UIP. First when I got there, they did > ABGs (OMG!! It hurt so bad!! I had it done once before and I didn't > even feel it, but not this time. She had to pry (her words)). Then > I had to do PFTs, which showed 57% lung function, compared to the 68% > I had in December. Next, I visited with the doc. Actually there > were 2 docs. The first one was a fellow of Dr. de Andrade (who was > the Assistant Professor). His name was Dr. , very nice guy. > He took down all my history and said he thinks I may have pulmonary > hypertension (which would explain the rapid heart rate). He did exam >

and then goes to discuss with Dr. de Andrade, who comes back in and > again, very nice guy. He explains that it is very rare in a woman > under the age of 50 to have pulmonary fibrosis and since I have been > sick for 6 years already, even more rare, not unheard of, just rare. > So I am a model case!! Anyhoo, due to this fact that I AM so rare, > he thinks there is an underlying disease causing the PF, so I get > blood work (10 tubes of blood) for various autoimmune diseases. He > is leaning towards Sjogren's or scleroderma (mostly scleroderma for > which also there is no cure). Dr. did a heart exam and looked > at the veins in my neck before talking to Dr. de Andrade who decided > I needed another chest CT (my last one was in February 2008), so I > had that done (without contrast thank God!!) and also that I needed > an ultrasound of my heart to check for blood

flow to the heart and > for any blockages to the valves. All in all, he said if I don't hear > from them in a week, to call them to get the results. Other than > that, he didn't change any of my medications, except to decrease the > prednisone even further to 10 mg a day. He said he wants me to get > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I > told him I had gained 20 pounds since being on them starting in > January, and told him I have moon faces and he agreed. He said they > want me lean and healthy and I did not need to be on that for sure. > Any weight gain is out of the question, he said. He told me I have > to keep moving. He told me to eat lean proteins, fruits, and veggies > and no snacks. He PROMISED me the weight will come off. He said he > expects me to lose 10 pounds rather quickly. I sure hope he is > right, because I am

miserable and I told him so, too!! He said there > are no real medications to treat PF, and I knew that, but he said > when I come back, I can decide either to go with the Imuran and N-> Acetyl-Cysteine (NAC), which is all the best they know at this point > to give patients with PF, or I can try an experimental drug (clinical > trial), which I don't know what the side effects will be, but I am > kinda leaning towards doing anyway, because I feel like even if it > doesn't help me, it may help some other person with this stupid > disease on down the road and it would be worth it. As for lung > transplant, I don't yet qualify because my sats are not low enough > and I am not on oxygen yet. Note that I said "YET." He said the key > to prolonging oxygen use as long as possible is to stay as active and > healthy as possible and that is what I am going to try and do. >

(my grandson) is here with me this summer, and he really > helps to keep me motivated and I think I need that right now. Also > the docs were really glad to know that I am in pulmonary rehab and > that I am going to stay in the Wellness Program when I get done with > the rehab program. All in all, even though I did get some not so > good news, I feel like I got some good news, also, so until next week > or whenever I get the results, I am just trying to keep my self in > exercise and health mode the best I can and keep going.> > So that was my Birmingham visit. My parents went with me and we > really had a nice trip. I don't know what I would do without them. > They have been my rock through all of this. Thank God for my Mama > and Daddy!!> > I hope you all have a great week and now that I am back I hope to be > able to keep up with posts

better and write more than I have been. I > do reads all the posts and think of each and every one of you > everyday. You are my air family and you are my rock, as well. Don't > know what I would do without you guys, either!! I love you all!!> > Have a great day!!> > Caro>

June 19, 2008

Caro,

I doubt that you're further along than they thought. Mainly cause you haven't needed supplemental O2 yet. I don't have it yet and I was diagnosed 2 years ago and have been on O2 ever since. The results of the ultrasound will tell you what you need to know. I wouldn't worry alot about it, just wait and see.

With all you did today, you'd have to be Wonder Woman not to be tired. I babysat for my two nieces today, walked 45 minutes on the treadmill then came home and did three loads of laundry, took a shower and I'm pooped!

I'm no better at waiting than you are....patience is not one of my attributes!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: BirminghamTo: Breathe-Support@ yahoogroups. comDate: Thursday, June 19, 2008, 7:50 AM

Caro,

Sounds as if you found good docs in B'ham. I am concerned that they say it is rare for anyone under the age of 50 to have IPF. I first had symptoms in my early forties and now I am 53.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>> Hi All,> > Sorry I haven't posted in a few days again, but I am back from > Birmingham. Still don't know anything definite other than the > diagnosis I already have of UIP. First when I got there, they did > ABGs (OMG!! It hurt so bad!! I had it done once before and I didn't > even feel it, but not this time. She had to pry (her words)). Then > I had to do PFTs, which showed 57% lung function, compared to the 68% > I had in December. Next, I visited with the doc. Actually there > were 2 docs. The first one was a fellow of Dr. de Andrade (who was > the Assistant Professor). His name was Dr. , very nice guy. > He took down all my history and said he thinks I may have pulmonary > hypertension (which would explain the rapid heart rate). He did exam >

and then goes to discuss with Dr. de Andrade, who comes back in and > again, very nice guy. He explains that it is very rare in a woman > under the age of 50 to have pulmonary fibrosis and since I have been > sick for 6 years already, even more rare, not unheard of, just rare. > So I am a model case!! Anyhoo, due to this fact that I AM so rare, > he thinks there is an underlying disease causing the PF, so I get > blood work (10 tubes of blood) for various autoimmune diseases. He > is leaning towards Sjogren's or scleroderma (mostly scleroderma for > which also there is no cure). Dr. did a heart exam and looked > at the veins in my neck before talking to Dr. de Andrade who decided > I needed another chest CT (my last one was in February 2008), so I > had that done (without contrast thank God!!) and also that I needed > an ultrasound of my heart to check for blood

flow to the heart and > for any blockages to the valves. All in all, he said if I don't hear > from them in a week, to call them to get the results. Other than > that, he didn't change any of my medications, except to decrease the > prednisone even further to 10 mg a day. He said he wants me to get > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I > told him I had gained 20 pounds since being on them starting in > January, and told him I have moon faces and he agreed. He said they > want me lean and healthy and I did not need to be on that for sure. > Any weight gain is out of the question, he said. He told me I have > to keep moving. He told me to eat lean proteins, fruits, and veggies > and no snacks. He PROMISED me the weight will come off. He said he > expects me to lose 10 pounds rather quickly. I sure hope he is > right, because I am

miserable and I told him so, too!! He said there > are no real medications to treat PF, and I knew that, but he said > when I come back, I can decide either to go with the Imuran and N-> Acetyl-Cysteine (NAC), which is all the best they know at this point > to give patients with PF, or I can try an experimental drug (clinical > trial), which I don't know what the side effects will be, but I am > kinda leaning towards doing anyway, because I feel like even if it > doesn't help me, it may help some other person with this stupid > disease on down the road and it would be worth it. As for lung > transplant, I don't yet qualify because my sats are not low enough > and I am not on oxygen yet. Note that I said "YET." He said the key > to prolonging oxygen use as long as possible is to stay as active and > healthy as possible and that is what I am going to try and do. >

(my grandson) is here with me this summer, and he really > helps to keep me motivated and I think I need that right now. Also > the docs were really glad to know that I am in pulmonary rehab and > that I am going to stay in the Wellness Program when I get done with > the rehab program. All in all, even though I did get some not so > good news, I feel like I got some good news, also, so until next week > or whenever I get the results, I am just trying to keep my self in > exercise and health mode the best I can and keep going.> > So that was my Birmingham visit. My parents went with me and we > really had a nice trip. I don't know what I would do without them. > They have been my rock through all of this. Thank God for my Mama > and Daddy!!> > I hope you all have a great week and now that I am back I hope to be > able to keep up with posts

better and write more than I have been. I > do reads all the posts and think of each and every one of you > everyday. You are my air family and you are my rock, as well. Don't > know what I would do without you guys, either!! I love you all!!> > Have a great day!!> > Caro>

June 20, 2008

Caro, I too have scleroderma but it hasn't really begun to affect my

skin yet, though I've felt a little tightening on my face in the past

year. I've had scleroderma for a great many years now, and they think

it is the likely cause of my PF as well.

I had GERD that was caused by arthritis meds, and it totally burnt out

my reflux so I'm on Prevacid for life. My esophagus strictures and I

have to go have it stretched every few years so I can swallow.

Scleroderma is certainly not a picnic, but I wanted to reassure you

that it doesn't necessarily mean your skin will turn to stone

immediately. It's affecting our internal organs so may not do much

damage to the outer appearance. We can pray for that anyway!

I'm also 47.

Hugs!

Babs in Texas

DX with PF due to lupus/scleroderma/rheumatoid arthritis in November

1999. Also have raynaud's, sjogren's, crohn's and dermatamyositis.

> > >

> > > Hi All,

> > >

> > > Sorry I haven't posted in a few days again, but I am back from

> > > Birmingham. Still don't know anything definite other than the

> > > diagnosis I already have of UIP. First when I got there, they did

> > > ABGs (OMG!! It hurt so bad!! I had it done once before and I didn't

> > > even feel it, but not this time. She had to pry (her words)). Then

> > > I had to do PFTs, which showed 57% lung function, compared to the

> 68%

> > > I had in December. Next, I visited with the doc. Actually there

> > > were 2 docs. The first one was a fellow of Dr. de Andrade (who was

> > > the Assistant Professor). His name was Dr. , very nice guy.

> > > He took down all my history and said he thinks I may have pulmonary

> > > hypertension (which would explain the rapid heart rate). He did exam

> > > and then goes to discuss with Dr. de Andrade, who comes back in and

> > > again, very nice guy. He explains that it is very rare in a woman

> > > under the age of 50 to have pulmonary fibrosis and since I have been

> > > sick for 6 years already, even more rare, not unheard of, just rare.

> > > So I am a model case!! Anyhoo, due to this fact that I AM so rare,

> > > he thinks there is an underlying disease causing the PF, so I get

> > > blood work (10 tubes of blood) for various autoimmune diseases. He

> > > is leaning towards Sjogren's or scleroderma (mostly scleroderma for

> > > which also there is no cure). Dr.. did a heart exam and

looked

> > > at the veins in my neck before talking to Dr. de Andrade who decided

> > > I needed another chest CT (my last one was in February 2008), so I

> > > had that done (without contrast thank God!!) and also that I needed

> > > an ultrasound of my heart to check for blood flow to the heart and

> > > for any blockages to the valves. All in all, he said if I don't hear

> > > from them in a week, to call them to get the results. Other than

> > > that, he didn't change any of my medications, except to decrease the

> > > prednisone even further to 10 mg a day. He said he wants me to get

> > > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I

> > > told him I had gained 20 pounds since being on them starting in

> > > January, and told him I have moon faces and he agreed.. He said they

> > > want me lean and healthy and I did not need to be on that for sure.

> > > Any weight gain is out of the question, he said. He told me I have

> > > to keep moving. He told me to eat lean proteins, fruits, and veggies

> > > and no snacks. He PROMISED me the weight will come off. He said he

> > > expects me to lose 10 pounds rather quickly. I sure hope he is

> > > right, because I am miserable and I told him so, too!! He said there

> > > are no real medications to treat PF, and I knew that, but he said

> > > when I come back, I can decide either to go with the Imuran and N-

> > > Acetyl-Cysteine (NAC), which is all the best they know at this point

> > > to give patients with PF, or I can try an experimental drug

> (clinical

> > > trial), which I don't know what the side effects will be, but I am

> > > kinda leaning towards doing anyway, because I feel like even if it

> > > doesn't help me, it may help some other person with this stupid

> > > disease on down the road and it would be worth it. As for lung

> > > transplant, I don't yet qualify because my sats are not low enough

> > > and I am not on oxygen yet. Note that I said " YET. " He said the key

> > > to prolonging oxygen use as long as possible is to stay as active

> and

> > > healthy as possible and that is what I am going to try and do.

> > > (my grandson) is here with me this summer, and he really

> > > helps to keep me motivated and I think I need that right now. Also

> > > the docs were really glad to know that I am in pulmonary rehab and

> > > that I am going to stay in the Wellness Program when I get done with

> > > the rehab program. All in all, even though I did get some not so

> > > good news, I feel like I got some good news, also, so until next

> week

> > > or whenever I get the results, I am just trying to keep my self in

> > > exercise and health mode the best I can and keep going.

> > >

> > > So that was my Birmingham visit. My parents went with me and we

> > > really had a nice trip. I don't know what I would do without them.

> > > They have been my rock through all of this. Thank God for my Mama

> > > and Daddy!!

> > >

> > > I hope you all have a great week and now that I am back I hope to be

> > > able to keep up with posts better and write more than I have been. I

> > > do reads all the posts and think of each and every one of you

> > > everyday. You are my air family and you are my rock, as well. Don't

> > > know what I would do without you guys, either!! I love you all!!

> > >

> > > Have a great day!!

> > >

> > > Caro

> > >

> >

>

June 21, 2008

Hi Caro,

How's the high fiber diet going? I Hope it's going OK! Have you tried the Colace? Sorry

to hear about your diagnosis of Scleroderma.

Hi Barbara, I just saw under your signature you have Crohn's...I'm I seeing right? sorry

now a days, I see something and it's something different from what I saw lol!. How long

have you had it for? Are you on treatment? The Methotrexate caused my PF. Due to some

medications, last year they said I have developped Drug Induced Lupus.

Hugs IrenePF 03/07 Raynaud's Disease 09/07Crohn's Disease 03/95 Asthma 02/92

Re: CaroTo: Breathe-Support@ yahoogroups. comDate: Friday, June 20, 2008, 9:38 PM

Caro, I too have scleroderma but it hasn't really begun to affect myskin yet, though I've felt a little tightening on my face in the pastyear. I've had scleroderma for a great many years now, and they thinkit is the likely cause of my PF as well.I had GERD that was caused by arthritis meds, and it totally burnt outmy reflux so I'm on Prevacid for life. My esophagus strictures and Ihave to go have it stretched every few years so I can swallow. Scleroderma is certainly not a picnic, but I wanted to reassure youthat it doesn't necessarily mean your skin will turn to stoneimmediately. It's affecting our internal organs so may not do muchdamage to the outer appearance. We can pray for that anyway!I'm also 47. :)Hugs!Babs in TexasDX with PF due to lupus/scleroderma/ rheumatoid arthritis in November1999. Also have raynaud's, sjogren's, crohn's and dermatamyositis. > > >> > > Hi All,> > >> > > Sorry I haven't posted in a few days again, but I am back from> > > Birmingham. Still don't know anything definite other than the> > > diagnosis I already have of UIP. First when I got there, they did> > > ABGs (OMG!! It hurt so bad!! I had it done once before and I didn't> > > even feel it, but not this time. She had to pry (her words)). Then> > > I had to do PFTs, which showed 57% lung function, compared to the> 68%> > > I had in December. Next, I visited with the doc. Actually

there> > > were 2 docs. The first one was a fellow of Dr. de Andrade (who was> > > the Assistant Professor). His name was Dr. , very nice guy.> > > He took down all my history and said he thinks I may have pulmonary> > > hypertension (which would explain the rapid heart rate). He did exam> > > and then goes to discuss with Dr. de Andrade, who comes back in and> > > again, very nice guy. He explains that it is very rare in a woman> > > under the age of 50 to have pulmonary fibrosis and since I have been> > > sick for 6 years already, even more rare, not unheard of, just rare.> > > So I am a model case!! Anyhoo, due to this fact that I AM so rare,> > > he thinks there is an underlying disease causing the PF, so I get> > > blood work (10 tubes of blood) for various autoimmune diseases. He> > > is

leaning towards Sjogren's or scleroderma (mostly scleroderma for> > > which also there is no cure). Dr.. did a heart exam andlooked> > > at the veins in my neck before talking to Dr. de Andrade who decided> > > I needed another chest CT (my last one was in February 2008), so I> > > had that done (without contrast thank God!!) and also that I needed> > > an ultrasound of my heart to check for blood flow to the heart and> > > for any blockages to the valves. All in all, he said if I don't hear> > > from them in a week, to call them to get the results. Other than> > > that, he didn't change any of my medications, except to decrease the> > > prednisone even further to 10 mg a day. He said he wants me to get> > > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I> > > told him I had gained 20

pounds since being on them starting in> > > January, and told him I have moon faces and he agreed.. He said they> > > want me lean and healthy and I did not need to be on that for sure.> > > Any weight gain is out of the question, he said. He told me I have> > > to keep moving. He told me to eat lean proteins, fruits, and veggies> > > and no snacks. He PROMISED me the weight will come off. He said he> > > expects me to lose 10 pounds rather quickly. I sure hope he is> > > right, because I am miserable and I told him so, too!! He said there> > > are no real medications to treat PF, and I knew that, but he said> > > when I come back, I can decide either to go with the Imuran and N-> > > Acetyl-Cysteine (NAC), which is all the best they know at this point> > > to give patients with PF, or I can try an experimental

drug> (clinical> > > trial), which I don't know what the side effects will be, but I am> > > kinda leaning towards doing anyway, because I feel like even if it> > > doesn't help me, it may help some other person with this stupid> > > disease on down the road and it would be worth it. As for lung> > > transplant, I don't yet qualify because my sats are not low enough> > > and I am not on oxygen yet. Note that I said "YET." He said the key> > > to prolonging oxygen use as long as possible is to stay as active> and> > > healthy as possible and that is what I am going to try and do.> > > (my grandson) is here with me this summer, and he really> > > helps to keep me motivated and I think I need that right now. Also> > > the docs were really glad to know that I am in pulmonary rehab and>

> > that I am going to stay in the Wellness Program when I get done with> > > the rehab program. All in all, even though I did get some not so> > > good news, I feel like I got some good news, also, so until next> week> > > or whenever I get the results, I am just trying to keep my self in> > > exercise and health mode the best I can and keep going.> > >> > > So that was my Birmingham visit. My parents went with me and we> > > really had a nice trip. I don't know what I would do without them.> > > They have been my rock through all of this. Thank God for my Mama> > > and Daddy!!> > >> > > I hope you all have a great week and now that I am back I hope to be> > > able to keep up with posts better and write more than I have been. I> > > do reads all the posts and think of each

and every one of you> > > everyday. You are my air family and you are my rock, as well. Don't> > > know what I would do without you guys, either!! I love you all!!> > >> > > Have a great day!!> > >> > > Caro> > >> >>

Instant message from any web browser! Try the new Yahoo! Canada Messenger for the Web BETA

July 6, 2008

Oh Caro, you have no idea how much sense it makes, though I realize it probably only makes sense to us. All this nonsense just feels so damned random...you know what I mean? I don't generally do the "why me" pity party thing but I can't help but do the why? as in help me understand this so my world can make some kind of sense again thing.

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

CaroTo: Breathe-Support@ yahoogroups. comDate: Sunday, July 6, 2008, 11:13 AM

Caro,

I'm so glad that your biopsy is done and you're on the road to recovery. It's a miserable procedure (but you know that already, don't you?). When have they told you to expect the final results? I'm sure you feel you probably already know the results. And in a weird way it would almost be a relief to know what caused the fibrosis wouldn't it? I know that's kind of what I've been going through with my probable diagnosis of "undifferentiated connective tissue disease" or maybe "polymyositis" or maybe "dermatomyositis" or some other bizaare thing. LOL

Anyway, I'm glad it's over and hope you're feeling like your self soon!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

July 6, 2008

I know perfectly what you mean!! Just some kind of answer or explanation, anything -- that would be better than just thinking, well out of some random order you got picked to get this terminal disease and that's just the way it is. I totally agree -- DAMNIT!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

From: Beth <mbmurthayahoo (DOT) com>Subject: CaroTo: Breathe-Support@ yahoogroups. comDate: Sunday, July 6, 2008, 11:13 AM

Caro,

I'm so glad that your biopsy is done and you're on the road to recovery. It's a miserable procedure (but you know that already, don't you?). When have they told you to expect the final results? I'm sure you feel you probably already know the results. And in a weird way it would almost be a relief to know what caused the fibrosis wouldn't it? I know that's kind of what I've been going through with my probable diagnosis of "undifferentiated connective tissue disease" or maybe "polymyositis" or maybe "dermatomyositis" or some other bizaare thing. LOL

Anyway, I'm glad it's over and hope you're feeling like your self soon!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

July 6, 2008

Beth/Caro I'm butting in but wanted to let you know this(your 2 emails) helps me understand the decisions I've made i.e. Lung Biopsy. I keep saying now no more tests and nothing but blood work, but understand from your posts I would agree to any test that might fill my curriosity or need to know why. I've always been a pro-active in my life and going re-active as doctors seem to be drives me nuts. Where is Doctor Houser?

Steve 60 from WA IPF 2006 Parkinsons 2008

Alzheimers 2008

Reply-To: Breathe-Support To: Breathe-Support Subject: Re: CaroDate: Sun, 6 Jul 2008 09:32:33 -0700 (PDT)

Oh Caro, you have no idea how much sense it makes, though I realize it probably only makes sense to us. All this nonsense just feels so damned random...you know what I mean? I don't generally do the "why me" pity party thing but I can't help but do the why? as in help me understand this so my world can make some kind of sense again thing.

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

CaroTo: Breathe-Support@ yahoogroups. comDate: Sunday, July 6, 2008, 11:13 AM

Caro,

I'm so glad that your biopsy is done and you're on the road to recovery. It's a miserable procedure (but you know that already, don't you?). When have they told you to expect the final results? I'm sure you feel you probably already know the results. And in a weird way it would almost be a relief to know what caused the fibrosis wouldn't it? I know that's kind of what I've been going through with my probable diagnosis of "undifferentiated connective tissue disease" or maybe "polymyositis" or maybe "dermatomyositis" or some other bizaare thing. LOL

Anyway, I'm glad it's over and hope you're feeling like your self soon!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

July 6, 2008

Beth,

My best friend is like that. She was diagnosed with Crohn's disease after there was blood in her stool. The biopsy was positive. She refuses to see a more qualified gastrointerologist or a rheumatologist. They only found very small lesions and she has no other symptoms. But, if it were me, I would be loading up with information and preventive measures. It is almost always progressive and when it gets bad, it is really bad.

I did all kind of research for her. She said she was not going to think about it unless she began having problems. Crohn's is autoimmune and can lead to other problems. It drives me nuts.

But, we all deal in our own way. For myself, anytime I have chosen to ignore a health problem, it gets worse.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

> > From: Beth mbmurthayahoo (DOT) com>> Subject: Caro> To: Breathe-Support@ yahoogroups. com> Date: Sunday, July 6, 2008, 11:13 AM> > > Caro,> I'm so glad that your biopsy is done and you're on the road to recovery. It's a miserable procedure (but you know that already, don't you?). When have they told you to expect the final results? I'm sure you feel you probably already know the results. And in a weird way it would almost be a relief to know what caused the fibrosis wouldn't it? I know that's kind of what I've been going through with my probable diagnosis of "undifferentiated connective tissue disease" or maybe "polymyositis" or maybe "dermatomyositis" or some other bizaare thing. LOL> > Anyway, I'm glad it's over and hope you're feeling like your self soon!> Beth > Age 48 Fibrotic NSIP 06/06> > Change everything. Love and Forgive > > >

July 7, 2008

MB/Joyce

I see that attitude of Beth's month and Joyce's friend, especially

with previous generations but I have a friend you lives in a rural area

of Texas who has it as well. There is ultimately little we can do but it

pains me to know they may have something quite controllable which is not

being managed and will lead to more problems. I can only bring up a

couple of examples on my own of things that could have dangerously been

ignored.

1-1997, I experienced some congestion in my ears and discomfort I

couldn't exactly describe. My hearing was impacted and I went to a

doctor in South Florida who then made an ENT referral. However, getting

in was ages. I moved to Texas, saw a doctor, went to an ENT after meds

didn't clear it up and immediately they told me I needed surgery.

Diagnosis-Cholesteatoma. Prognosis Untreated-destruction of inner ear,

possible progression to brain and meningitis. Potentially, brain abseess

and death.

2-2003, I started experiencing fairly severe stomach problems and

vomiting but waiting to get treatment longer than I should have. Had

endoscopy. Had stomach inflammation and GERD/acid reflus. It has

continued, my esophagus isn't good, and on 80 MG/Day of Nexium with

regular Endoscopies. However, without treatment most definitely would

have encountered far more serious esophagus and stomach problems and

probably more damage to lungs.

3-2005, had first colonoscopy. Tumor found. Had colon resection removing

precancerous tumor (Note this differs from simply benign in that it is

considered to be one that definitely would have turned into cancerous).

No recurrence since. Without removal by now would have certainly had

cancer which if caught early is 70% treatable through chemo and if not

the odds significantly decrease. No colonoscopy and odds are pretty good

that it would have spread by now and turned into full blown cancer.

4-2007, I had three severe shortness of breath episodes although short

of breath to some degree for long time which I attributed to allergies

and DFW air. Six minute walk led down the path to discovery of PF.

Without discovery and oxygen I would not only feel very bad but would be

destroying the other organs of my body. Who knows how my heart or

kidneys would be at this point. Without oxygen, I could certainly see

myself fairly much housebound and unable to do much for myself. I can't

even imagine cooking dinner, putting dishes in dishwasher, or doing

laundry without it.

These are just four very real personal situations where I may have not

gotten treatment as soon as I should have, but had I not gone when I did

I would at best have a far worse health condition than I do now and at

worst I wouldn't be alive to tell this tale.

> >

> > From: Beth mbmurthayahoo (DOT) com>

> > Subject: Caro

> > To: Breathe-Support@ yahoogroups. com

> > Date: Sunday, July 6, 2008, 11:13 AM

> >

> > Caro,

> > I'm so glad that your biopsy is done and you're on the road to

> recovery. It's a miserable procedure (but you know that already, don't

> you?). When have they told you to expect the final results? I'm sure

> you feel you probably already know the results. And in a weird way it

> would almost be a relief to know what caused the fibrosis wouldn't it?

I

> know that's kind of what I've been going through with my probable

> diagnosis of " undifferentiated connective tissue disease " or maybe

> " polymyositis " or maybe " dermatomyositis " or some other bizaare thing.

> LOL

> >

> > Anyway, I'm glad it's over and hope you're feeling like your self

> soon!

> > Beth

> > Age 48 Fibrotic NSIP 06/06

> >

> > Change everything. Love and Forgive

> >

>

July 7, 2008