Re: Getting started

November 2, 2006

Hi Oly,

Hang I there. Being short of breath is a

terrifying experience. You also can’t think when you can’t breath. I

am learning to pace myself so I don’t get exhausted. Its interesting you

mentioned good days.

I have good days and bad days. Does

everyone else?

Fl. P.F. 4/06

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Oly

Sent: Thursday, November 02, 2006

5:20 PM

To: Breathe-Support

Subject: Getting

started

I found out that I had pumonary fibrosis 4 years ago when I went to the

hospital thinking I had a bad flu, since then my life has been turned upside

down.. It's been very hard to get any imformation on this illness, and that

includes doctors.. They tell you that they have no imformation on this

diseases, and they send you off to either find the imformation yourself, or go

home and wait to die.

I have been reading about my illness, but i want to know more.. I

really hope you all that are going through the same thing I am can help me

understand my condition.

Right now I am having good days, of course the reason being my steroids

have been increaced again. I am going to see a new pulmonary dr. on the 13th,

she is suppose to be the best in the field.. I had a great dr, but since I have

not been able to work i have no insurance, this new dr, is from a pubic

hospital in Fl. memorial, I know it a wonderful hopital, and I am l!

ucky to be in a state that has good free health care, because like I said this

deceases has turned my life unside down. I have lost everything in a matter of

minutes. Thank God my sister has taken me in,and my other siblings are helping

me out.. I had a time that I couldn't breath, I would be afraid to leave the

oxegen tank. I would have panic attacks because I caouldn't catch my breath.

Well I am here now to learn as much as I can from all of you.I really want to

get some strenth from all of you, as well as tell you what is working for me

right now.

I am sorry this was so long..

Check

out the New Yahoo! Mail - Fire up a more powerful email and get things done

faster.

November 2, 2006

Oly,

I'll echo what everyone else has said and welcome you to the board but tell you I'm sorry you need to be here. I was just diagnosed this past June with interstitial lung disease and only this past month specifically with Fibrotic non-specific interstitial pneumonitis. I was hospitalized back on Memorial Day for two weeks, spent lots of time in the ICU, had an open lung biopsy, two days on the ventilator and so on and so on, ad nauseum.

I'm not able to work either, I've applied for SSDI and still have insurance from work through Cobra (to the tune of $402.30 per month...YIKES!!!) in short I'm in the same boat and it's full of holes!!

Like you, I have wonderful, generous, supportive siblings who are helping me to the best of their ability. I have good days and bad days. Right now the doctors are weaning me off the prednisone so I'm apprehensive. I've heard enough horror stories about the side effects of weaning to make me ask for anesthesia to get through the next few months. Fortunately my doctor assures me we're going to wean very slowly so hopefully that will help. Next month when I go down to 30mg he is following my doctor from Columbian Presbyterian's suggestion and starting me on the high dose Advair to help with the cough. He feels that it puts the steroid directly where it can help the only symptom I need it for is better than using the prednisone systemically.

I understand totally about panic and anxiety...we've all been there and felt it. Feel free to share as much as you want. Don't worry about writing long posts. Anyone can tell you I'm as wordy as they come and all these lovely people put up with me. There's not a kinder or more compassionate group of people anywhere on the planet!

So what is working for you right now? How much oxygen are you on? Are you able to sleep well at night? Insomnia is something many of us struggle with. Have you gone through a pulmonary rehab program? Where in Florida do you live? I'm in NY but planning to move to NC sometime shortly after the first of the year hopefully.

Again, welcome and I'm sorry you have to be here. God bless you!! Beth (Fibrotic NSIP 06/06)Draw close. Hold hands. Life is short. God is good.

Getting started

I found out that I had pumonary fibrosis 4 years ago when I went to the hospital thinking I had a bad flu, since then my life has been turned upside down.. It's been very hard to get any imformation on this illness, and that includes doctors.. They tell you that they have no imformation on this diseases, and they send you off to either find the imformation yourself, or go home and wait to die.

I have been reading about my illness, but i want to know more.. I really hope you all that are going through the same thing I am can help me understand my condition.

Right now I am having good days, of course the reason being my steroids have been increaced again. I am going to see a new pulmonary dr. on the 13th, she is suppose to be the best in the field.. I had a great dr, but since I have not been able to work i have no insurance, this new dr, is from a pubic hospital in Fl. memorial, I know it a wonderful hopital, and I am lucky to be in a state that has good free health care, because like I said this deceases has turned my life unside down. I have lost everything in a matter of minutes. Thank God my sister has taken me in,and my other siblings are helping me out.. I had a time that I couldn't breath, I would be afraid to leave the oxegen tank. I would have panic attacks because I caouldn't catch my breath. Well I am here now to learn as much as I can from all of you.I really want to get some strenth from all of you, as well as tell you what is working for me right now.

I am sorry this was so long..

Check out the New Yahoo! Mail - Fire up a more powerful email and get things done faster.

November 2, 2006

Joy,

Fibrotic non-specific interstitial pneumonitis (or pneumonia) is simply a form of interstitial lung disease like IPF (idiopathic pulmonary fibrosis) or UIP (usual interstitial pneumonia). They are differences in what the CT scans look like and what the biopsies look like that can enable doctors to differentiate.

My particular disease is pretty rare and apparently does not respond to prednisone at least not in the long term. I remain convinced however that the prednisone did help to stablize me in the beginning. That said, I'm happy to be coming off of it now. Fibrotic NSIP has a survival time (depending on what you read) of somewhere from 5-10 years. For that I'm grateful in that it gives me more time to lose the weight I need to lose and get in good cardio vascular shape in preparation for a likely eventual lung transplant.

My open lung biopsy was done when I was already hospitalized. They tried to do the VATS biopsy but I did very badly in the operating room. They tried, my lung collapsed, they intubated me (and had a very hard time doing it I'm told) continued on and did the open lung biopsy and put the chest tube in. I coded and ended up on a ventilator for two days and in the ICU for 5 days. After the initial period though I've done fine post biopsy and haven't had any pain since I had my stitches out.

There are lots of folks on here though who continue to have pain months and months after the fact so my experience is not typical. I'm glad I had it done because combined with the HRCT scan it did enable my doctors to give me a very specific diagnosis. In all honesty though I'm not at all certain what the specificity of the diagnosis is worth when there's nothing they can do but perhaps down the road there will be more they can tell me about this disease as opposed to some of the others. There is research being done all the time so I remain hopeful.

I wouldn't begin to advise someone else to have this biopsy. It's a tough call and while it does provide alot of information, it is debatable how useful that information is.

Here I go again, never using one word where 10 will do as well. Sorry this is so long, I tend to get carried away! Beth (Fibrotic NSIP 06/06)Draw close. Hold hands. Life is short. God is good.

Getting started

I found out that I had pumonary fibrosis 4 years ago when I went to the hospital thinking I had a bad flu, since then my life has been turned upside down.. It's been very hard to get any imformation on this illness, and that includes doctors.. They tell you that they have no imformation on this diseases, and they send you off to either find the imformation yourself, or go home and wait to die.

I have been reading about my illness, but i want to know more.. I really hope you all that are going through the same thing I am can help me understand my condition.

Right now I am having good days, of course the reason being my steroids have been increaced again. I am going to see a new pulmonary dr. on the 13th, she is suppose to be the best in the field.. I had a great dr, but since I have not been able to work i have no insurance, this new dr, is from a pubic hospital in Fl. memorial, I know it a wonderful hopital, and I am lucky to be in a state that has good free health care, because like I said this deceases has turned my life unside down. I have lost everything in a matter of minutes. Thank God my sister has taken me in,and my other siblings are helping me out.. I had a time that I couldn't breath, I would be afraid to leave the oxegen tank. I would have panic attacks because I caouldn't catch my breath. Well I am here now to learn as much as I can from all of you.I really want to get some strenth from all of you, as well as tell you what is working for me right now.

I am sorry this was so long..

Check out the New Yahoo! Mail - Fire up a more powerful email and get things done faster.

Joy

(IPF 3/06)

Today is a gift for each

of us. Enjoy it.

November 2, 2006

I can add to Beth's comments as well. I had the Vats biopsy last month and was diagnosed with Desquamative Interstitial Pneumonitis and the latest statistics on it states 70% live over 10 years. I had no idea I had this disease or any lung disease until this past July when they accidentally discovered low O2 stats on me and investigated further. I was happy to hear I had more time than I at first thought before the biopsy, but saddened to learn that I was probably already at the halfway point. If I had not had the biopsy I would probably at this point be expecting to take a sudden turn downhill based on statistics alone, but now knowing I have a greater chance to live a little longer I feel more like trying to stay more active and making efforts to work at improving my health through diet and medication. I honestly feel if I had not had the biopsy I would have just given up, thinking I had a years worth of life at the most. I know that is a bad way to think, but I am being honest about myself. So for me the biopsy is something I am glad I did. I did have chest pain afterwards for several weeks, but it is gone now. Like Beth, I would not presume to encourage anyone to go through the procedure as it is mainly done for diagnostic reasons and does not really change the type of treatment you will receive. For me, though I think it was the right thing to do even though it was pretty unpleasant to go through.

Hugs,

Carolyn

-- Re: Getting started

Joy,

Fibrotic non-specific interstitial pneumonitis (or pneumonia) is simply a form of interstitial lung disease like IPF (idiopathic pulmonary fibrosis) or UIP (usual interstitial pneumonia). They are differences in what the CT scans look like and what the biopsies look like that can enable doctors to differentiate.

My particular disease is pretty rare and apparently does not respond to prednisone at least not in the long term. I remain convinced however that the prednisone did help to stablize me in the beginning. That said, I'm happy to be coming off of it now. Fibrotic NSIP has a survival time (depending on what you read) of somewhere from 5-10 years. For that I'm grateful in that it gives me more time to lose the weight I need to lose and get in good cardio vascular shape in preparation for a likely eventual lung transplant.

My open lung biopsy was done when I was already hospitalized. They tried to do the VATS biopsy but I did very badly in the operating room. They tried, my lung collapsed, they intubated me (and had a very hard time doing it I'm told) continued on and did the open lung biopsy and put the chest tube in. I coded and ended up on a ventilator for two days and in the ICU for 5 days. After the initial period though I've done fine post biopsy and haven't had any pain since I had my stitches out.

There are lots of folks on here though who continue to have pain months and months after the fact so my experience is not typical. I'm glad I had it done because combined with the HRCT scan it did enable my doctors to give me a very specific diagnosis. In all honesty though I'm not at all certain what the specificity of the diagnosis is worth when there's nothing they can do but perhaps down the road there will be more they can tell me about this disease as opposed to some of the others. There is research being done all the time so I remain hopeful.

I wouldn't begin to advise someone else to have this biopsy. It's a tough call and while it does provide alot of information, it is debatable how useful that information is.

Here I go again, never using one word where 10 will do as well. Sorry this is so long, I tend to get carried away! Beth (Fibrotic NSIP 06/06)Draw close. Hold hands. Life is short. God is good.

Getting started

I found out that I had pumonary fibrosis 4 years ago when I went to the hospital thinking I had a bad flu, since then my life has been turned upside down.. It's been very hard to get any imformation on this illness, and that includes doctors.. They tell you that they have no imformation on this diseases, and they send you off to either find the imformation yourself, or go home and wait to die.

I have been reading about my illness, but i want to know more.. I really hope you all that are going through the same thing I am can help me understand my condition.

Right now I am having good days, of course the reason being my steroids have been increaced again. I am going to see a new pulmonary dr. on the 13th, she is suppose to be the best in the field.. I had a great dr, but since I have not been able to work i have no insurance, this new dr, is from a pubic hospital in Fl. memorial, I know it a wonderful hopital, and I am lucky to be in a state that has good free health care, because like I said this deceases has turned my life unside down. I have lost everything in a matter of minutes. Thank God my sister has taken me in,and my other siblings are helping me out.. I had a time that I couldn't breath, I would be afraid to leave the oxegen tank. I would have panic attacks because I caouldn't catch my breath. Well I am here now to learn as much as I can from all of you.I really want to get some strenth from all of you, as well as tell you what is working for me right now.

I am sorry this was so long..

Check out the New Yahoo! Mail - Fire up a more powerful email and get things done faster.

Joy

(IPF 3/06)

Today is a gift for each

of us. Enjoy it.

November 3, 2006

Carolyn,

I agree 100% on the psychological effect of having the information on the survival time of my specific disease. Initially I was told I had IPF and had probably 2 or 4 years. Although I was still pretty determined to fight at that point, finding out folks with NSIP typically live a few years longer has definitely given me incentive to work harder at getting and staying healthy.

I'm the type who wants to be in the driver seat as much as possible. OK, I'll admit it, I'm a control freak. Having the information and using it to help take care of myself just makes me feel better. Beth (Fibrotic NSIP 06/06)Draw close. Hold hands. Life is short. God is good.

Getting started

I found out that I had pumonary fibrosis 4 years ago when I went to the hospital thinking I had a bad flu, since then my life has been turned upside down.. It's been very hard to get any imformation on this illness, and that includes doctors.. They tell you that they have no imformation on this diseases, and they send you off to either find the imformation yourself, or go home and wait to die.

I have been reading about my illness, but i want to know more.. I really hope you all that are going through the same thing I am can help me understand my condition.

Right now I am having good days, of course the reason being my steroids have been increaced again. I am going to see a new pulmonary dr. on the 13th, she is suppose to be the best in the field.. I had a great dr, but since I have not been able to work i have no insurance, this new dr, is from a pubic hospital in Fl. memorial, I know it a wonderful hopital, and I am lucky to be in a state that has good free health care, because like I said this deceases has turned my life unside down. I have lost everything in a matter of minutes. Thank God my sister has taken me in,and my other siblings are helping me out.. I had a time that I couldn't breath, I would be afraid to leave the oxegen tank. I would have panic attacks because I caouldn't catch my breath. Well I am here now to learn as much as I can from all of you.I really want to get some strenth from all of you, as well as tell you what is working for me right now.

I am sorry this was so long..

Check out the New Yahoo! Mail - Fire up a more powerful email and get things done faster.

Joy

(IPF 3/06)

Today is a gift for each

of us. Enjoy it.

November 3, 2006

Joyce...this is revisiting an old conversation on the board but when you say a terminal dx results in disability I wish I knew how it's done. Some of you will remember my frustration at trying to get disability and can't. I'm already on SS and I'm told there is no other program. I've called twice. What am I missing????

Sher ipf 5-06

Re: Getting started

Oly,

Did you take Methotrexate for your Rheumatoid Arthritis? It is known for scarring the lungs. I have connective tissue disease, which includes RA, Sjogrens, and primarily Lupus. I took it and wonder about it's effect on my lungs.

I was sick for a few years with lung problems and was misdiagnosed and undertreated. I did biopsy in 1997. They concluded that it was Pulmonary Fibrosis secondary to Lupus. The docs (by then, I had found good doctors) began to agressivly treat Lupus and my fibrosis did not move so fast. They used Imuran and later I began taking Cellcept.

I was approved for Social Security Disability before I was diagnosed with PF. It was a battle which eventually included a lawyer. Rheumatoid disease is so overwhelming. People have the notion that it is only a joint disease, but it is a systemic disease which effects the whole body. People on this site say that if you are diagnosed with a terminal illness that disability is approved. All interstitial lung diseases are terminal. The expected life span is just more or less according to what it is named. They may require a biopsy to prove your illness.

You should wear your 02 when showering. It is one of the most difficult tasks for us. Take some questions with you when you see the new doctor. Be prepared. I am so glad that you are seeing someone new.

Glad you are here,

Hugs, Joyce PF 1997 Bronchiectasis 2004

>> Hey everyone, Thank you for welcoming to your group, already I feel like I have learned so much.. But i also learned I hace a lot to learn and to find out about.. I know my desease is fatel but no one has told me as of yet how long I have.. When I was in the Hospital this last August with an attack, that what I called it " The doctor in the hospital wanted to schedule me for a byopsy.. I told my pulmonary doctor and he advised me not to have it , because it wouldn't give any additional imformation.. But then I read that it does help?? Now I am confussed.. Yes I am feeling really good right now !! I only use ox, in the night when sleeping, "no I have no problem falling asleep" But i have noticed that I am not needing to take naps lately.. I am taking Humaira for my RA which is suppose to help with my pulmonary fibrosis, the have tried to ween me off of steroids but! when ever they do that I get deathly sick!! Can't breath I can't even take a shower without running out to use> the oxogen , right now I am in the lowest mg. I have ever used and it seems to be working , I am taking 4mg in the morning and 4 mg at night. of Methylprednisolne, in the hospital they gave me huge amounts of predesone, I got totaly out of controll!! I was crying, getting angry for anything and everything, I got my period again after years of being without it!! my hormons were crazy>, the weening off didn't go well either.The ups and downs were horrible.. To tell you the truth I don't know how my sister didn't throw me out into the street, I was impossible and I knew it, but couldn't stop it, I would cry for hours!! and then would calm down, and anyting would start me up again.Thank god I got through that, and my poor sister did too.So thats what I am doing right now.. The only thing diffent that I am doing is I get one shot of Humira a week instead of onc! e every two weeks. I really don't know what is helping me but something is, I am going to meet my new pulmonary doctor> on 13th I have never met her she is suppose to be the best in her field and in research with pulmonary fibrosis, I live in Miami FL. and we have a very good pubic hospital, I haven't had insurance since April of last year, and not working and useing all my 401 k just to live I no longer have income to afford any insurance. it is very hard right now , I get no help from the grov. because I am 47 years old, to young for medicare, and to young for medicade!! I have been denied social security 3 times!! They said I am not sick enough not to work.. They don't know I rather be working.. So now I have hired a lawyer to help me with this, but he says it could still take another year!! can you believe that???I have to wait another year!! Thank God that I get Humira for free from the company, my Ra doctor got that for me , and I am able to get my meds through Ja! ckson Hospital pharmacy for $5.00 each.. Before then I went a few months without, The Humira is very expensive my> insurance would pay 80% and I would pay the 20% which was $60.00 each month.> without insurance it was$1895.00 No way could I pay that even when I was working > so I went without that for a few months I was in so much pain!! I couldn't dress myself > I would sit in the shower and cry until the pain would get a little better, and the pain killers would kick in.. some times I couldn't get out of my room because I wasn't able to open the door..my hands were closed., I think that's enough for now thanks for answering me.. You are all in my prayers.. God bless you all..> > > > > > ---------------------------------> Get your email and see which of your friends are online - Right on the new Yahoo.com>

November 3, 2006

I want to welcome you to a great, loving board Oly. I've been so busy trouble shooting my computer I've only posted infrequently.

Everyone has pretty much said how it is here with us. You will be so glad you are here and eventually you will notice different personalities and those you feel especially drawn to.

The guys post too so I'm hoping "Oly" is a guy-name and they will welcome you as well.

Anything you want to know about this disease you can probably find out here. Someone of us has been through it. I'm fairly new to the board...well 5 months already! I'm in the mild stage of our disease and don't have a lot to contribute as to the personal experience of ipf. I was diagnosed in May this year and I'm still asking questions.

Keep coming back.

Sher ipf 5-06

Getting started

Hey everyone, Thank you for welcoming to your group, already I feel like I have learned so much.. But i also learned I hace a lot to learn and to find out about.. I know my desease is fatel but no one has told me as of yet how long I have.. When I was in the Hospital this last August with an attack, that what I called it " The doctor in the hospital wanted to schedule me for a byopsy.. I told my pulmonary doctor and he advised me not to have it , because it wouldn't give any additional imformation.. But then I read that it does help?? Now I am confussed.. Yes I am feeling really good right now !! I only use ox, in the night when sleeping, "no I have no problem falling asleep" But i have noticed that I am not needing to take naps lately.. I am taking Humaira for my RA which is suppose to help with my pulmonary fibrosis, the have tried to ween me off of steroids but when ever they do that I get deathly sick!! Can't breath I can't even take a shower witho! ut running out to use the oxogen , right now I am in the lowest mg. I have ever used and it seems to be working , I am taking 4mg in the morning and 4 mg at night. of Methylprednisolne, in the hospital they gave me huge amounts of predesone, I got totaly out of controll!! I was crying, getting angry for anything and everything, I got my period again after years of being without it!! my hormons were crazy>, the weening off didn't go well either.The ups and downs were horrible.. To tell you the truth I don't know how my sister didn't throw me out into the street, I was impossible and I knew it, but couldn't stop it, I would cry for hours!! and then would calm down, and anyting would start me up again.Thank god I got through that, and my poor sister did too.So thats what I am doing right now.. The only thing diffent that I am doing is I get one shot of Humira a week instead of once every two weeks. I really don't know what is helping me but something is, I am going to meet my new pulmonary doctor on 13th I have never met her she is suppose to be the best in her field and in research with pulmonary fibrosis, I live in Miami FL. and we have a very good pubic hospital, I haven't had insurance since April of last year, and not working and useing all my 401 k just to live I no longer have income to afford any insurance. it is very hard right now , I get no help from the grov. because I am 47 years old, to young for medicare, and to young for medicade!! I have been denied social security 3 times!! They said I am not sick enough not to work.. They don't know I rather be working.. So now I have hired a lawyer to help me with this, but he says it could still take another year!! can you believe that???I have to wait another year!! Thank God that I get Humira for free from the company, my Ra doctor got that for me , and I am able to get my meds through Hospital pharmacy for $5.00 each.. Before then I went a few months without, The Humira is very expensive my insurance would pay 80% and I would pay the 20% which was $60.00 each month.

without insurance it was$1895.00 No way could I pay that even when I was working

so I went without that for a few months I was in so much pain!! I couldn't dress myself

I would sit in the shower and cry until the pain would get a little better, and the pain killers would kick in.. some times I couldn't get out of my room because I wasn't able to open the door..my hands were closed., I think that's enough for now thanks for answering me.. You are all in my prayers.. God bless you all..

Get your email and see which of your friends are online - Right on the new Yahoo.com

November 3, 2006

It seems several of us were diagnosed 5/6 !! Altho, that does not reflect how long we have had IPF

Joy

(IPF 3/06)

Today is a gift for each

of us. Enjoy it.

Getting started

Hey everyone, Thank you for welcoming to your group, already I feel like I have learned so much.. But i also learned I hace a lot to learn and to find out about.. I know my desease is fatel but no one has told me as of yet how long I have.. When I was in the Hospital this last August with an attack, that what I called it " The doctor in the hospital wanted to schedule me for a byopsy.. I told my pulmonary doctor and he advised me not to have it , because it wouldn't give any additional imformation. . But then I read that it does help?? Now I am confussed.. Yes I am feeling really good right now !! I only use ox, in the night when sleeping, "no I have no problem falling asleep" But i have noticed that I am not needing to take naps lately.. I am taking Humaira for my RA which is suppose to help with my pulmonary fibrosis, the have tried to ween me off of steroids but when ever they do that I get deathly sick!! Can't breath I can't even take a shower witho! ut running out

to use the oxogen , right now I am in the lowest mg. I have ever used and it seems to be working , I am taking 4mg in the morning and 4 mg at night. of Methylprednisolne, in the hospital they gave me huge amounts of predesone, I got totaly out of controll!! I was crying, getting angry for anything and everything, I got my period again after years of being without it!! my hormons were crazy>, the weening off didn't go well either.The ups and downs were horrible.. To tell you the truth I don't know how my sister didn't throw me out into the street, I was impossible and I knew it, but couldn't stop it, I would cry for hours!! and then would calm down, and anyting would start me up again.Thank god I got through that, and my poor sister did too.So thats what I am doing right now.. The only thing diffent that I am doing is I get one shot of Humira a week instead of once every two weeks. I really don't know what is helping me but something is, I am

going to meet my new pulmonary doctor on 13th I have never met her she is suppose to be the best in her field and in research with pulmonary fibrosis, I live in Miami FL. and we have a very good pubic hospital, I haven't had insurance since April of last year, and not working and useing all my 401 k just to live I no longer have income to afford any insurance. it is very hard right now , I get no help from the grov. because I am 47 years old, to young for medicare, and to young for medicade!! I have been denied social security 3 times!! They said I am not sick enough not to work.. They don't know I rather be working.. So now I have hired a lawyer to help me with this, but he says it could still take another year!! can you believe that???I have to wait another year!! Thank God that I get Humira for free from the company, my Ra doctor got that for me , and I am able to get my meds through Hospital pharmacy for $5.00 each.. Before

then I went a few months without, The Humira is very expensive my insurance would pay 80% and I would pay the 20% which was $60.00 each month.

without insurance it was$1895.00 No way could I pay that even when I was working

so I went without that for a few months I was in so much pain!! I couldn't dress myself

I would sit in the shower and cry until the pain would get a little better, and the pain killers would kick in.. some times I couldn't get out of my room because I wasn't able to open the door..my hands were closed., I think that's enough for now thanks for answering me.. You are all in my prayers.. God bless you all..

Get your email and see which of your friends are online - Right on the new Yahoo.com

November 3, 2006

That's true...do you know how long you have had this disease? I don't. I think I was diagnosed extremely early, although hind-sight gives me clues that "something was wrong"...

Sher ipf 5-06

Getting started

Hey everyone, Thank you for welcoming to your group, already I feel like I have learned so much.. But i also learned I hace a lot to learn and to find out about.. I know my desease is fatel but no one has told me as of yet how long I have.. When I was in the Hospital this last August with an attack, that what I called it " The doctor in the hospital wanted to schedule me for a byopsy.. I told my pulmonary doctor and he advised me not to have it , because it wouldn't give any additional imformation. . But then I read that it does help?? Now I am confussed.. Yes I am feeling really good right now !! I only use ox, in the night when sleeping, "no I have no problem falling asleep" But i have noticed that I am not needing to take naps lately.. I am taking Humaira for my RA which is suppose to help with my pulmonary fibrosis, the have tried to ween me off of steroids but when ever they do that I get deathly sick!! Can't breath I can't even take a shower witho! ut running out to use the oxogen , right now I am in the lowest mg. I have ever used and it seems to be working , I am taking 4mg in the morning and 4 mg at night. of Methylprednisolne, in the hospital they gave me huge amounts of predesone, I got totaly out of controll!! I was crying, getting angry for anything and everything, I got my period again after years of being without it!! my hormons were crazy>, the weening off didn't go well either.The ups and downs were horrible.. To tell you the truth I don't know how my sister didn't throw me out into the street, I was impossible and I knew it, but couldn't stop it, I would cry for hours!! and then would calm down, and anyting would start me up again.Thank god I got through that, and my poor sister did too.So thats what I am doing right now.. The only thing diffent that I am doing is I get one shot of Humira a week instead of once every two weeks. I really don't know what is helping me but something is, I am going to meet my new pulmonary doctor on 13th I have never met her she is suppose to be the best in her field and in research with pulmonary fibrosis, I live in Miami FL. and we have a very good pubic hospital, I haven't had insurance since April of last year, and not working and useing all my 401 k just to live I no longer have income to afford any insurance. it is very hard right now , I get no help from the grov. because I am 47 years old, to young for medicare, and to young for medicade!! I have been denied social security 3 times!! They said I am not sick enough not to work.. They don't know I rather be working.. So now I have hired a lawyer to help me with this, but he says it could still take another year!! can you believe that???I have to wait another year!! Thank God that I get Humira for free from the company, my Ra doctor got that for me , and I am able to get my meds through Hospital pharmacy for $5.00 each.. Before then I went a few months without, The Humira is very expensive my insurance would pay 80% and I would pay the 20% which was $60.00 each month.

without insurance it was$1895.00 No way could I pay that even when I was working

so I went without that for a few months I was in so much pain!! I couldn't dress myself

I would sit in the shower and cry until the pain would get a little better, and the pain killers would kick in.. some times I couldn't get out of my room because I wasn't able to open the door..my hands were closed., I think that's enough for now thanks for answering me.. You are all in my prayers.. God bless you all..

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November 3, 2006

I do remember that Aug of 2005 I was unable to move chairs - fold and replace - I ended up walking away angry that I had no strength to help, and I felt horrible. I let it go for months. In Feb 06 my husband took me to NY and we were gone 2 weeks. I could not go up stairs without stopping to catch my breath. We walked every where - and I was miserable! I saw my pulm in March - and was probably diagnosed at that time......I don't have a cough, don't vomit, etc. not looking forward to it either! I've excepted my illness - easy to say when I don't have all the symptoms many others on this board have. I do have low staturation, exept when sitting. JOY