Re: New to board

[Guest guest]

Hi !

You might have heard this before - but the waiting really is the

worst part. Luckily for you - the waiting will be over in a week.

I had surgery (upper/lower/genio) on December 10th and was very

nervous also since it was the first time I was having surgery (the

general anesthesia worried me more than anything) But everything went

well. And at almost a month post-op - I'm doing fine.

You should re-read some old posts here. They'll give you some ideas

of what to expect. Fiddlestick has a wonderful site that I

found helpful also - http://www.geocties.com/orthognathicinfo

If you have any specific questions - ask away.

Best of luck!

Johanne

> Sorry for butting in like this but I am scheduled to have surgery

> next Monday January 12th and am actually scared to death only

because

> this is my first time having surgery or being in a hospital. My

> doctor has been extremely helpful and very informative but I would

> love to get some tips, or advice on recovery etc for after the

> surgery. I know everyone has different experiences but would like

to

> hear what everyone has experienced themselves good and bad. I just

> want to know what to expect. ) Thank you all very much and best

> of luck you all also.

>

>

[Guest guest]

Welcome to the group, Donna. I have been on the board for about a year and half now, maybe 2. Don't post as often as some of the others, but I would not have made it had it not been for this group. Any question any time anyhow anyway someone is here to help. Yes, I agree this disease does stink!!! Some days I feel like I am not even sick and other days I can't even get out of bed. Every now and then I think it is good to visit the "waterworks" and let the tears flow, but I try not to go there often. Just stay as busy as possible and try not to think about it. I had the same reaction as you when I read on the Internet the "3 to 5 year" death diagnosis, but hey, has been nearly 2 years already and I am not on O2 yet, so I think so far I am doing fairly well. And you are a good example, too, if you were diagnosed in 2003 you have already passed the 5 year mark, so as a

lot of us say here, we don't come with an expiration date stamped on our behinds!! I am glad you found us.

In case I get caught up with the grandkids this weekend --

HAPPY EASTER EVERYONE!!!!! CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

To: Breathe-Support Sent: Wednesday, April 8, 2009 11:55:01 PMSubject: Re: New To Board

Donna, Boy have you come to the right place...WELCOME!Crying ,I understand and the cursing too!There is a link to the PH and PF..many of us have both!Isn't prednisone the worst/best drug around?I've been on it for 3+ YEARS...STABLE since DX!!!I have osteoporosis, GERD, cataracts, thanks to it...but my arthritis doesn't hurt as much andI now have curly hair..no joke..my hair went from poker straight to curly in about 9 months!!!I'm also O2 dependent..3 lpm 24/7...hate it but I deal with it...I get out daily.I'm married for 43+ years, have 3 grown kids and two gorgeous grand daughters 3 1/2 and 14 months!We sign off with our names, DX and date and state to help keep us aware of who is who.Many of us have added other stuff just for fun!Again welcome to the "Air Family"BTW...we're having a virtual Easter Day picnic in Maine this week-end...please join

us...bringsomething fun...Jack is hosting in Acadia National Park.

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07 and Reynaud’s too!!

No, NSIP was not self-inflicted…I never smoked!

Potter, reader,carousel lover and MomMom to Darah and Sara

“I’m gonna be iron like a lion in Zion†Bob Marley

Vinca Minor-periwinkle is my flower

Donna wrote:

Hi All ...I'm fairly new to the board ... Have been lurking and getting a feel for it. You folks seem pretty darn NICE!!!My name is Donna. Wife to , Sr for 41 years; Mother to , Jr(40yo), Aimee(39yo) and Charlie(33yo) ; Grandmother to Silas(7yo), Abigail(4yo) , and Pippa & Jasper(2yo). THEY (all of the previous) are the joys in my life, for sure!! I was first diagnosed with Pulmonary Hypertension in Sept 2003. Was immediately admitted to the hospital on what I thought would be a routine visit for bronchitis. I had put off going to the doctor for about 8 or 9 months because of insurance change and having to find a new doctor. When on one Saturday afternoon when trying to change bedding on a twin size bed I became VERY SOB and felt I was about to pass out. I had had SOB for a year or more but because it came on fast but went away just as fast I more or less ignored it. That Saturday it was different ... I didn't like

the way my legs went limp and I had to grab onto my desk til the feeling passed. I called a doctor 'from accepted list' on Monday, got in to see him on Tuesday and as stated before was admitted to hospital right then and there. The PCP doc came into my room that night and told me it appeared I had PH and was bringing in Pulmo to my case. I called home and asked my son to see what he could find on the internet about PH -- I had never heard of it, but still had no idea it was so serious. My son brought print-offs to me that night and it scared me -- saying death within 5 years of diagnosis. OMG ... how could this be happening? Needless to say, I believe I was in shock. LOLThe next couple of days in the hospital I was put thru a battery of tests: echos, CTs, Blood Work, PFT, and others I forget now. Seems I spent little time in my room.After a week in the hospital I was released with oxygen 3lpn 24/7. That is first time I cried --- just the sound

of the concentrator. My mother and father had both died on a ventilator and the sound was so 'the same' that I just sat down on my bed and let the tears flow.The doctors were reluctant to put a cause to my PH, but kept referring to my taking of the diet drug Fen-Phen ....... which I took for maybe at most 3 months. I stopped when the doctor who was prescribing to me mentioned that I had a heart murmur which I NEVER had before even tho I did have a heart attack in 1989. Still, my cardio docs never mentioned a murmur, so I said WHOA to myself and stopped the Fen-Phen.During office visit with Pulmo, I was put on Prednisone. Being naive -- I had not found forums at that time -- I was just going along with whatever the doctors said. Heck, they just HAD to know more than me, cause I knew nothing. Then Pulmo suggested a biopsy. His words being "Something else is going on with your lungs. We can continue to treat with Pred and hope for the best

or we can do the biopsy and be sure." Heck, I wanted 'to be sure' not a hit and a miss treatment. I went into hospital to have biopsy 2 days before Thanksgiving in 2003. I only spent one night in hospital. My drainage tube came out on it's own, so I was sent home on Thanksgiving Eve. That was the BEST and worst Thanksgiving in opposite pole ways. I had some discomfort, called the surgeon and went for office visit at their request. The surgeon is the one who gave me the diagnosis of PF on that visit. Again, I was shocked. I do remember saying to him "Well, at least it's not cancer" The look on his face was not good. I said, "Would cancer be better?" He just sorta nodded his head -- not a full blown yes, mind you. Again, the tears flowed. In an attempt to shorten this novel. LOL ... let me say that the doctors (and I even went to Vanderbilt for evaluation to be placed in a study there) ALL said that the PH and PF were independent of one another. I

to this day do not know how they made that determination. Because I was unable to give them yes answers to the questions they asked, it was determined I had IPF and PPH!!I am not a candidate for transplant because of the PPH and my heart condition. Soooo, that is where I stand. Presently taking a fistful of meds daily, one being Tracleer for the PH, but I understand it is now being considered for the treatment of PF also. I, on that basis, believe that drug is more than likely what has hald me 'steady' up until recently.I have an appt with my Pulmo on May 1st after a year and I feel as tho we might see some progression. I know I don't feel so good the past 3-4 months, yet not bad enough to schedule an earlier appointment. We shall see. Could be something else entirely.Due to the Pred, I now also have diabetes, neuropathy, cataracts. Seems it's always something. Either I can't sleep at all or I sleep too much ---- Can't eat at all or

can't get enough to eat. I have to laugh at myself and the turns my body takes or I would go nutz!Thanks for hanging with me on this long diatribe .... I promise my future posts will be shorter. ROFLGod Bless you all ....... you may be new to me but you are all in my prayers and I hope you will add me to yours. It's a hideous disease. I hate it!!! (and don't use the word hate much ... taught my kids it was the 'devil's word' and they should say strongly dislike -- LOL ... so that shows you exactly how I feel)

[Guest guest]

Welcome to the group, Donna. I have been on the board for about a year and half now, maybe 2. Don't post as often as some of the others, but I would not have made it had it not been for this group. Any question any time anyhow anyway someone is here to help. Yes, I agree this disease does stink!!! Some days I feel like I am not even sick and other days I can't even get out of bed. Every now and then I think it is good to visit the "waterworks" and let the tears flow, but I try not to go there often. Just stay as busy as possible and try not to think about it. I had the same reaction as you when I read on the Internet the "3 to 5 year" death diagnosis, but hey, has been nearly 2 years already and I am not on O2 yet, so I think so far I am doing fairly well. And you are a good example, too, if you were diagnosed in 2003 you have already passed the 5 year mark, so as a

lot of us say here, we don't come with an expiration date stamped on our behinds!! I am glad you found us.

In case I get caught up with the grandkids this weekend --

HAPPY EASTER EVERYONE!!!!! CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

To: Breathe-Support Sent: Wednesday, April 8, 2009 11:55:01 PMSubject: Re: New To Board

Donna, Boy have you come to the right place...WELCOME!Crying ,I understand and the cursing too!There is a link to the PH and PF..many of us have both!Isn't prednisone the worst/best drug around?I've been on it for 3+ YEARS...STABLE since DX!!!I have osteoporosis, GERD, cataracts, thanks to it...but my arthritis doesn't hurt as much andI now have curly hair..no joke..my hair went from poker straight to curly in about 9 months!!!I'm also O2 dependent..3 lpm 24/7...hate it but I deal with it...I get out daily.I'm married for 43+ years, have 3 grown kids and two gorgeous grand daughters 3 1/2 and 14 months!We sign off with our names, DX and date and state to help keep us aware of who is who.Many of us have added other stuff just for fun!Again welcome to the "Air Family"BTW...we're having a virtual Easter Day picnic in Maine this week-end...please join

us...bringsomething fun...Jack is hosting in Acadia National Park.

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07 and Reynaud’s too!!

No, NSIP was not self-inflicted…I never smoked!

Potter, reader,carousel lover and MomMom to Darah and Sara

“I’m gonna be iron like a lion in Zion†Bob Marley

Vinca Minor-periwinkle is my flower

Donna wrote:

Hi All ...I'm fairly new to the board ... Have been lurking and getting a feel for it. You folks seem pretty darn NICE!!!My name is Donna. Wife to , Sr for 41 years; Mother to , Jr(40yo), Aimee(39yo) and Charlie(33yo) ; Grandmother to Silas(7yo), Abigail(4yo) , and Pippa & Jasper(2yo). THEY (all of the previous) are the joys in my life, for sure!! I was first diagnosed with Pulmonary Hypertension in Sept 2003. Was immediately admitted to the hospital on what I thought would be a routine visit for bronchitis. I had put off going to the doctor for about 8 or 9 months because of insurance change and having to find a new doctor. When on one Saturday afternoon when trying to change bedding on a twin size bed I became VERY SOB and felt I was about to pass out. I had had SOB for a year or more but because it came on fast but went away just as fast I more or less ignored it. That Saturday it was different ... I didn't like

the way my legs went limp and I had to grab onto my desk til the feeling passed. I called a doctor 'from accepted list' on Monday, got in to see him on Tuesday and as stated before was admitted to hospital right then and there. The PCP doc came into my room that night and told me it appeared I had PH and was bringing in Pulmo to my case. I called home and asked my son to see what he could find on the internet about PH -- I had never heard of it, but still had no idea it was so serious. My son brought print-offs to me that night and it scared me -- saying death within 5 years of diagnosis. OMG ... how could this be happening? Needless to say, I believe I was in shock. LOLThe next couple of days in the hospital I was put thru a battery of tests: echos, CTs, Blood Work, PFT, and others I forget now. Seems I spent little time in my room.After a week in the hospital I was released with oxygen 3lpn 24/7. That is first time I cried --- just the sound

of the concentrator. My mother and father had both died on a ventilator and the sound was so 'the same' that I just sat down on my bed and let the tears flow.The doctors were reluctant to put a cause to my PH, but kept referring to my taking of the diet drug Fen-Phen ....... which I took for maybe at most 3 months. I stopped when the doctor who was prescribing to me mentioned that I had a heart murmur which I NEVER had before even tho I did have a heart attack in 1989. Still, my cardio docs never mentioned a murmur, so I said WHOA to myself and stopped the Fen-Phen.During office visit with Pulmo, I was put on Prednisone. Being naive -- I had not found forums at that time -- I was just going along with whatever the doctors said. Heck, they just HAD to know more than me, cause I knew nothing. Then Pulmo suggested a biopsy. His words being "Something else is going on with your lungs. We can continue to treat with Pred and hope for the best

or we can do the biopsy and be sure." Heck, I wanted 'to be sure' not a hit and a miss treatment. I went into hospital to have biopsy 2 days before Thanksgiving in 2003. I only spent one night in hospital. My drainage tube came out on it's own, so I was sent home on Thanksgiving Eve. That was the BEST and worst Thanksgiving in opposite pole ways. I had some discomfort, called the surgeon and went for office visit at their request. The surgeon is the one who gave me the diagnosis of PF on that visit. Again, I was shocked. I do remember saying to him "Well, at least it's not cancer" The look on his face was not good. I said, "Would cancer be better?" He just sorta nodded his head -- not a full blown yes, mind you. Again, the tears flowed. In an attempt to shorten this novel. LOL ... let me say that the doctors (and I even went to Vanderbilt for evaluation to be placed in a study there) ALL said that the PH and PF were independent of one another. I

to this day do not know how they made that determination. Because I was unable to give them yes answers to the questions they asked, it was determined I had IPF and PPH!!I am not a candidate for transplant because of the PPH and my heart condition. Soooo, that is where I stand. Presently taking a fistful of meds daily, one being Tracleer for the PH, but I understand it is now being considered for the treatment of PF also. I, on that basis, believe that drug is more than likely what has hald me 'steady' up until recently.I have an appt with my Pulmo on May 1st after a year and I feel as tho we might see some progression. I know I don't feel so good the past 3-4 months, yet not bad enough to schedule an earlier appointment. We shall see. Could be something else entirely.Due to the Pred, I now also have diabetes, neuropathy, cataracts. Seems it's always something. Either I can't sleep at all or I sleep too much ---- Can't eat at all or

can't get enough to eat. I have to laugh at myself and the turns my body takes or I would go nutz!Thanks for hanging with me on this long diatribe .... I promise my future posts will be shorter. ROFLGod Bless you all ....... you may be new to me but you are all in my prayers and I hope you will add me to yours. It's a hideous disease. I hate it!!! (and don't use the word hate much ... taught my kids it was the 'devil's word' and they should say strongly dislike -- LOL ... so that shows you exactly how I feel)

[Guest guest]

Welcome, Donna!

I am so sorry that you have this monster of a disease plus PPH. I have been diagnosed for ten years with UIP/IPF. Fortunately no PH. I have been on the board here for 2 + years and the journey that I have had with all the people here has guided me throughout many obstacles that I faced such as: changing my pulmodude at Emory, joining a study, feeling the need to vent, etc. etc. The best part of my experience on the board has been meeting some of these people face-to-face. It is an awesome experience to meet someone who truly knows what I go through because they do, too. I was on so much prednisone and had no idea that long term use was desvastating until too late. I was kind of like you in that I kept on pushing to find out what was wrong with me, what it was, what could I do In 2003 I remember making a quick decision to have the VATS because the doc kept pushing the idea. At that time though, I was already fairly sure of my diagnosis of IPF because I had had plenty of CT scans and PFTs. The recovery from the VATS was very hard for me. I was put on oxygen after the surgery but I should have stayed on it. A year later I suffered from ARDs or acute respiratory distress syndrome. I was hospitalized for six months. I spent four months on the vent and I had a trach. But I survived and had to learn how to walk again, talk, eat, and everything thanks to my husband who told them that I was still there and he didn't want the vent removed until I was better. He knew I was going to make it.

I look forward to reading more posts about your experience. Take care!

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl >> Hi All ...> I'm fairly new to the board ... Have been lurking and getting a feel for it. You folks seem pretty darn NICE!!!> > My name is Donna. Wife to , Sr for 41 years; Mother to , Jr(40yo), Aimee(39yo) and Charlie(33yo); Grandmother to Silas(7yo), Abigail(4yo), and Pippa & Jasper(2yo). THEY (all of the previous) are the joys in my life, for sure!! > > I was first diagnosed with Pulmonary Hypertension in Sept 2003. Was immediately admitted to the hospital on what I thought would be a routine visit for bronchitis. I had put off going to the doctor for about 8 or 9 months because of insurance change and having to find a new doctor. When on one Saturday afternoon when trying to change bedding on a twin size bed I became VERY SOB and felt I was about to pass out. I had had SOB for a year or more but because it came on fast but went away just as fast I more or less ignored it. That Saturday it was different ... I didn't like the way my legs went limp and I had to grab onto my desk til the feeling passed. I called a doctor 'from accepted list' on Monday, got in to see him on Tuesday and as stated before was admitted to hospital right then and there. The PCP doc came into my room that night and told me it appeared I had PH and was bringing in Pulmo to my case. I called home and asked my son to see what he could find on the internet about PH -- I had never heard of it, but still had no idea it was so serious. My son brought print-offs to me that night and it scared me -- saying death within 5 years of diagnosis. OMG ... how could this be happening? Needless to say, I believe I was in shock. LOL> The next couple of days in the hospital I was put thru a battery of tests: echos, CTs, Blood Work, PFT, and others I forget now. Seems I spent little time in my room.> After a week in the hospital I was released with oxygen 3lpn 24/7. That is first time I cried --- just the sound of the concentrator. My mother and father had both died on a ventilator and the sound was so 'the same' that I just sat down on my bed and let the tears flow.> > The doctors were reluctant to put a cause to my PH, but kept referring to my taking of the diet drug Fen-Phen ....... which I took for maybe at most 3 months. I stopped when the doctor who was prescribing to me mentioned that I had a heart murmur which I NEVER had before even tho I did have a heart attack in 1989. Still, my cardio docs never mentioned a murmur, so I said WHOA to myself and stopped the Fen-Phen.> > During office visit with Pulmo, I was put on Prednisone. Being naive -- I had not found forums at that time -- I was just going along with whatever the doctors said. Heck, they just HAD to know more than me, cause I knew nothing. Then Pulmo suggested a biopsy. His words being "Something else is going on with your lungs. We can continue to treat with Pred and hope for the best or we can do the biopsy and be sure." Heck, I wanted 'to be sure' not a hit and a miss treatment. I went into hospital to have biopsy 2 days before Thanksgiving in 2003. I only spent one night in hospital. My drainage tube came out on it's own, so I was sent home on Thanksgiving Eve. That was the BEST and worst Thanksgiving in opposite pole ways. I had some discomfort, called the surgeon and went for office visit at their request. The surgeon is the one who gave me the diagnosis of PF on that visit. Again, I was shocked. I do remember saying to him "Well, at least it's not cancer" The look on his face was not good. I said, "Would cancer be better?" He just sorta nodded his head -- not a full blown yes, mind you. Again, the tears flowed. > > In an attempt to shorten this novel. LOL ... let me say that the doctors (and I even went to Vanderbilt for evaluation to be placed in a study there) ALL said that the PH and PF were independent of one another. I to this day do not know how they made that determination. Because I was unable to give them yes answers to the questions they asked, it was determined I had IPF and PPH!!> > I am not a candidate for transplant because of the PPH and my heart condition. Soooo, that is where I stand. Presently taking a fistful of meds daily, one being Tracleer for the PH, but I understand it is now being considered for the treatment of PF also. I, on that basis, believe that drug is more than likely what has hald me 'steady' up until recently.> > I have an appt with my Pulmo on May 1st after a year and I feel as tho we might see some progression. I know I don't feel so good the past 3-4 months, yet not bad enough to schedule an earlier appointment. We shall see. Could be something else entirely.> Due to the Pred, I now also have diabetes, neuropathy, cataracts. Seems it's always something. Either I can't sleep at all or I sleep too much ---- Can't eat at all or can't get enough to eat. I have to laugh at myself and the turns my body takes or I would go nutz!> > Thanks for hanging with me on this long diatribe .... I promise my future posts will be shorter. ROFL> > God Bless you all ....... you may be new to me but you are all in my prayers and I hope you will add me to yours. It's a hideous disease. I hate it!!! (and don't use the word hate much ... taught my kids it was the 'devil's word' and they should say strongly dislike -- LOL ... so that shows you exactly how I feel)>

[Guest guest]

Welcome, Donna!

I am so sorry that you have this monster of a disease plus PPH. I have been diagnosed for ten years with UIP/IPF. Fortunately no PH. I have been on the board here for 2 + years and the journey that I have had with all the people here has guided me throughout many obstacles that I faced such as: changing my pulmodude at Emory, joining a study, feeling the need to vent, etc. etc. The best part of my experience on the board has been meeting some of these people face-to-face. It is an awesome experience to meet someone who truly knows what I go through because they do, too. I was on so much prednisone and had no idea that long term use was desvastating until too late. I was kind of like you in that I kept on pushing to find out what was wrong with me, what it was, what could I do In 2003 I remember making a quick decision to have the VATS because the doc kept pushing the idea. At that time though, I was already fairly sure of my diagnosis of IPF because I had had plenty of CT scans and PFTs. The recovery from the VATS was very hard for me. I was put on oxygen after the surgery but I should have stayed on it. A year later I suffered from ARDs or acute respiratory distress syndrome. I was hospitalized for six months. I spent four months on the vent and I had a trach. But I survived and had to learn how to walk again, talk, eat, and everything thanks to my husband who told them that I was still there and he didn't want the vent removed until I was better. He knew I was going to make it.

I look forward to reading more posts about your experience. Take care!

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl >> Hi All ...> I'm fairly new to the board ... Have been lurking and getting a feel for it. You folks seem pretty darn NICE!!!> > My name is Donna. Wife to , Sr for 41 years; Mother to , Jr(40yo), Aimee(39yo) and Charlie(33yo); Grandmother to Silas(7yo), Abigail(4yo), and Pippa & Jasper(2yo). THEY (all of the previous) are the joys in my life, for sure!! > > I was first diagnosed with Pulmonary Hypertension in Sept 2003. Was immediately admitted to the hospital on what I thought would be a routine visit for bronchitis. I had put off going to the doctor for about 8 or 9 months because of insurance change and having to find a new doctor. When on one Saturday afternoon when trying to change bedding on a twin size bed I became VERY SOB and felt I was about to pass out. I had had SOB for a year or more but because it came on fast but went away just as fast I more or less ignored it. That Saturday it was different ... I didn't like the way my legs went limp and I had to grab onto my desk til the feeling passed. I called a doctor 'from accepted list' on Monday, got in to see him on Tuesday and as stated before was admitted to hospital right then and there. The PCP doc came into my room that night and told me it appeared I had PH and was bringing in Pulmo to my case. I called home and asked my son to see what he could find on the internet about PH -- I had never heard of it, but still had no idea it was so serious. My son brought print-offs to me that night and it scared me -- saying death within 5 years of diagnosis. OMG ... how could this be happening? Needless to say, I believe I was in shock. LOL> The next couple of days in the hospital I was put thru a battery of tests: echos, CTs, Blood Work, PFT, and others I forget now. Seems I spent little time in my room.> After a week in the hospital I was released with oxygen 3lpn 24/7. That is first time I cried --- just the sound of the concentrator. My mother and father had both died on a ventilator and the sound was so 'the same' that I just sat down on my bed and let the tears flow.> > The doctors were reluctant to put a cause to my PH, but kept referring to my taking of the diet drug Fen-Phen ....... which I took for maybe at most 3 months. I stopped when the doctor who was prescribing to me mentioned that I had a heart murmur which I NEVER had before even tho I did have a heart attack in 1989. Still, my cardio docs never mentioned a murmur, so I said WHOA to myself and stopped the Fen-Phen.> > During office visit with Pulmo, I was put on Prednisone. Being naive -- I had not found forums at that time -- I was just going along with whatever the doctors said. Heck, they just HAD to know more than me, cause I knew nothing. Then Pulmo suggested a biopsy. His words being "Something else is going on with your lungs. We can continue to treat with Pred and hope for the best or we can do the biopsy and be sure." Heck, I wanted 'to be sure' not a hit and a miss treatment. I went into hospital to have biopsy 2 days before Thanksgiving in 2003. I only spent one night in hospital. My drainage tube came out on it's own, so I was sent home on Thanksgiving Eve. That was the BEST and worst Thanksgiving in opposite pole ways. I had some discomfort, called the surgeon and went for office visit at their request. The surgeon is the one who gave me the diagnosis of PF on that visit. Again, I was shocked. I do remember saying to him "Well, at least it's not cancer" The look on his face was not good. I said, "Would cancer be better?" He just sorta nodded his head -- not a full blown yes, mind you. Again, the tears flowed. > > In an attempt to shorten this novel. LOL ... let me say that the doctors (and I even went to Vanderbilt for evaluation to be placed in a study there) ALL said that the PH and PF were independent of one another. I to this day do not know how they made that determination. Because I was unable to give them yes answers to the questions they asked, it was determined I had IPF and PPH!!> > I am not a candidate for transplant because of the PPH and my heart condition. Soooo, that is where I stand. Presently taking a fistful of meds daily, one being Tracleer for the PH, but I understand it is now being considered for the treatment of PF also. I, on that basis, believe that drug is more than likely what has hald me 'steady' up until recently.> > I have an appt with my Pulmo on May 1st after a year and I feel as tho we might see some progression. I know I don't feel so good the past 3-4 months, yet not bad enough to schedule an earlier appointment. We shall see. Could be something else entirely.> Due to the Pred, I now also have diabetes, neuropathy, cataracts. Seems it's always something. Either I can't sleep at all or I sleep too much ---- Can't eat at all or can't get enough to eat. I have to laugh at myself and the turns my body takes or I would go nutz!> > Thanks for hanging with me on this long diatribe .... I promise my future posts will be shorter. ROFL> > God Bless you all ....... you may be new to me but you are all in my prayers and I hope you will add me to yours. It's a hideous disease. I hate it!!! (and don't use the word hate much ... taught my kids it was the 'devil's word' and they should say strongly dislike -- LOL ... so that shows you exactly how I feel)>

[Guest guest]

Donna, welcome. You are surely among those will understand you completely. Best of all, it's a place where you can cuss, vent, carry on, scream, whatever and each of us will understand completely and sympathize. If you have been reading posts you may know that Sher and I are hosting a grand virtual picnic Easter Sunday afternoon at Acadia National Park in Maine. You are welcome to join us. Most of us have posted our picnic lunch and drinks and some even our clothing. I should add that since it is a virtual picnic, clothing is optional. We wouldn't notice anyway. Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Wednesday, April 8, 2009 11:35:22 PMSubject: New To Board

Hi All ...I'm fairly new to the board ... Have been lurking and getting a feel for it. You folks seem pretty darn NICE!!!My name is Donna. Wife to , Sr for 41 years; Mother to , Jr(40yo), Aimee(39yo) and Charlie(33yo) ; Grandmother to Silas(7yo), Abigail(4yo) , and Pippa & Jasper(2yo). THEY (all of the previous) are the joys in my life, for sure!! I was first diagnosed with Pulmonary Hypertension in Sept 2003. Was immediately admitted to the hospital on what I thought would be a routine visit for bronchitis. I had put off going to the doctor for about 8 or 9 months because of insurance change and having to find a new doctor. When on one Saturday afternoon when trying to change bedding on a twin size bed I became VERY SOB and felt I was about to pass out. I had had SOB for a year or more but because it came on fast but went away just as fast I more or less ignored it. That Saturday it was different ... I didn't like

the way my legs went limp and I had to grab onto my desk til the feeling passed. I called a doctor 'from accepted list' on Monday, got in to see him on Tuesday and as stated before was admitted to hospital right then and there. The PCP doc came into my room that night and told me it appeared I had PH and was bringing in Pulmo to my case. I called home and asked my son to see what he could find on the internet about PH -- I had never heard of it, but still had no idea it was so serious. My son brought print-offs to me that night and it scared me -- saying death within 5 years of diagnosis. OMG ... how could this be happening? Needless to say, I believe I was in shock.. LOLThe next couple of days in the hospital I was put thru a battery of tests: echos, CTs, Blood Work, PFT, and others I forget now. Seems I spent little time in my room.After a week in the hospital I was released with oxygen 3lpn 24/7. That is first time I cried --- just the sound

of the concentrator. My mother and father had both died on a ventilator and the sound was so 'the same' that I just sat down on my bed and let the tears flow.The doctors were reluctant to put a cause to my PH, but kept referring to my taking of the diet drug Fen-Phen ....... which I took for maybe at most 3 months. I stopped when the doctor who was prescribing to me mentioned that I had a heart murmur which I NEVER had before even tho I did have a heart attack in 1989. Still, my cardio docs never mentioned a murmur, so I said WHOA to myself and stopped the Fen-Phen.During office visit with Pulmo, I was put on Prednisone. Being naive -- I had not found forums at that time -- I was just going along with whatever the doctors said. Heck, they just HAD to know more than me, cause I knew nothing. Then Pulmo suggested a biopsy. His words being "Something else is going on with your lungs. We can continue to treat with Pred and hope for the best

or we can do the biopsy and be sure." Heck, I wanted 'to be sure' not a hit and a miss treatment. I went into hospital to have biopsy 2 days before Thanksgiving in 2003. I only spent one night in hospital. My drainage tube came out on it's own, so I was sent home on Thanksgiving Eve. That was the BEST and worst Thanksgiving in opposite pole ways. I had some discomfort, called the surgeon and went for office visit at their request. The surgeon is the one who gave me the diagnosis of PF on that visit. Again, I was shocked. I do remember saying to him "Well, at least it's not cancer" The look on his face was not good. I said, "Would cancer be better?" He just sorta nodded his head -- not a full blown yes, mind you. Again, the tears flowed. In an attempt to shorten this novel. LOL ... let me say that the doctors (and I even went to Vanderbilt for evaluation to be placed in a study there) ALL said that the PH and PF were independent of one another. I

to this day do not know how they made that determination. Because I was unable to give them yes answers to the questions they asked, it was determined I had IPF and PPH!!I am not a candidate for transplant because of the PPH and my heart condition. Soooo, that is where I stand. Presently taking a fistful of meds daily, one being Tracleer for the PH, but I understand it is now being considered for the treatment of PF also. I, on that basis, believe that drug is more than likely what has hald me 'steady' up until recently.I have an appt with my Pulmo on May 1st after a year and I feel as tho we might see some progression. I know I don't feel so good the past 3-4 months, yet not bad enough to schedule an earlier appointment. We shall see. Could be something else entirely.Due to the Pred, I now also have diabetes, neuropathy, cataracts. Seems it's always something. Either I can't sleep at all or I sleep too much ---- Can't eat at all or

can't get enough to eat. I have to laugh at myself and the turns my body takes or I would go nutz!Thanks for hanging with me on this long diatribe .... I promise my future posts will be shorter. ROFLGod Bless you all ....... you may be new to me but you are all in my prayers and I hope you will add me to yours. It's a hideous disease. I hate it!!! (and don't use the word hate much ... taught my kids it was the 'devil's word' and they should say strongly dislike -- LOL ... so that shows you exactly how I feel)

[Guest guest]

Donna,

Welcome! I'm so glad that you found our little corner of the internet! I am sorry you had reason to look for us but since you did I'm happy you found us.

You have been through the mill my friend! Reading all your struggles made my head spin. Please know that you are among friends here. It always helps me to know on the bad days that I can come here and someone will understand and be able to empathize. This disease can be isolating because there just aren't alot of people around us who have even heard of it. But we have each other and I'm grateful for it.

I'm looking forward to getting to know you better! Welcome!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wednesday, April 8, 2009 11:35:22 PMSubject: New To Board

Hi All ...I'm fairly new to the board ... Have been lurking and getting a feel for it. You folks seem pretty darn NICE!!!My name is Donna. Wife to , Sr for 41 years; Mother to , Jr(40yo), Aimee(39yo) and Charlie(33yo) ; Grandmother to Silas(7yo), Abigail(4yo) , and Pippa & Jasper(2yo). THEY (all of the previous) are the joys in my life, for sure!! I was first diagnosed with Pulmonary Hypertension in Sept 2003. Was immediately admitted to the hospital on what I thought would be a routine visit for bronchitis. I had put off going to the doctor for about 8 or 9 months because of insurance change and having to find a new doctor. When on one Saturday afternoon when trying to change bedding on a twin size bed I became VERY SOB and felt I was about to pass out. I had had SOB for a year or more but because it came on fast but went away just as fast I more or less ignored it. That Saturday it was different ... I didn't like

the way my legs went limp and I had to grab onto my desk til the feeling passed. I called a doctor 'from accepted list' on Monday, got in to see him on Tuesday and as stated before was admitted to hospital right then and there. The PCP doc came into my room that night and told me it appeared I had PH and was bringing in Pulmo to my case. I called home and asked my son to see what he could find on the internet about PH -- I had never heard of it, but still had no idea it was so serious. My son brought print-offs to me that night and it scared me -- saying death within 5 years of diagnosis. OMG ... how could this be happening? Needless to say, I believe I was in shock. LOLThe next couple of days in the hospital I was put thru a battery of tests: echos, CTs, Blood Work, PFT, and others I forget now. Seems I spent little time in my room.After a week in the hospital I was released with oxygen 3lpn 24/7. That is first time I cried --- just the sound

of the concentrator. My mother and father had both died on a ventilator and the sound was so 'the same' that I just sat down on my bed and let the tears flow.The doctors were reluctant to put a cause to my PH, but kept referring to my taking of the diet drug Fen-Phen ....... which I took for maybe at most 3 months. I stopped when the doctor who was prescribing to me mentioned that I had a heart murmur which I NEVER had before even tho I did have a heart attack in 1989. Still, my cardio docs never mentioned a murmur, so I said WHOA to myself and stopped the Fen-Phen.During office visit with Pulmo, I was put on Prednisone. Being naive -- I had not found forums at that time -- I was just going along with whatever the doctors said. Heck, they just HAD to know more than me, cause I knew nothing. Then Pulmo suggested a biopsy. His words being "Something else is going on with your lungs. We can continue to treat with Pred and hope for the best

or we can do the biopsy and be sure." Heck, I wanted 'to be sure' not a hit and a miss treatment. I went into hospital to have biopsy 2 days before Thanksgiving in 2003. I only spent one night in hospital. My drainage tube came out on it's own, so I was sent home on Thanksgiving Eve. That was the BEST and worst Thanksgiving in opposite pole ways. I had some discomfort, called the surgeon and went for office visit at their request. The surgeon is the one who gave me the diagnosis of PF on that visit. Again, I was shocked. I do remember saying to him "Well, at least it's not cancer" The look on his face was not good. I said, "Would cancer be better?" He just sorta nodded his head -- not a full blown yes, mind you. Again, the tears flowed. In an attempt to shorten this novel. LOL ... let me say that the doctors (and I even went to Vanderbilt for evaluation to be placed in a study there) ALL said that the PH and PF were independent of one another. I

to this day do not know how they made that determination. Because I was unable to give them yes answers to the questions they asked, it was determined I had IPF and PPH!!I am not a candidate for transplant because of the PPH and my heart condition. Soooo, that is where I stand. Presently taking a fistful of meds daily, one being Tracleer for the PH, but I understand it is now being considered for the treatment of PF also. I, on that basis, believe that drug is more than likely what has hald me 'steady' up until recently.I have an appt with my Pulmo on May 1st after a year and I feel as tho we might see some progression. I know I don't feel so good the past 3-4 months, yet not bad enough to schedule an earlier appointment. We shall see. Could be something else entirely.Due to the Pred, I now also have diabetes, neuropathy, cataracts. Seems it's always something. Either I can't sleep at all or I sleep too much ---- Can't eat at all or

can't get enough to eat. I have to laugh at myself and the turns my body takes or I would go nutz!Thanks for hanging with me on this long diatribe .... I promise my future posts will be shorter. ROFLGod Bless you all ....... you may be new to me but you are all in my prayers and I hope you will add me to yours. It's a hideous disease. I hate it!!! (and don't use the word hate much ... taught my kids it was the 'devil's word' and they should say strongly dislike -- LOL ... so that shows you exactly how I feel)

[Guest guest]

jack, i forgot about the clothing

now i have to figure out what to wear...

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: New To BoardTo: Breathe-Support Date: Thursday, April 9, 2009, 9:52 AM

Donna, welcome. You are surely among those will understand you completely. Best of all, it's a place where you can cuss, vent, carry on, scream, whatever and each of us will understand completely and sympathize. If you have been reading posts you may know that Sher and I are hosting a grand virtual picnic Easter Sunday afternoon at Acadia National Park in Maine. You are welcome to join us. Most of us have posted our picnic lunch and drinks and some even our clothing. I should add that since it is a virtual picnic, clothing is optional. We wouldn't notice anyway. Jack79/IPF - UIP/dx06/05 Maine

From: Donna <dunabug (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, April 8, 2009 11:35:22 PMSubject: New To Board

Hi All ...I'm fairly new to the board ... Have been lurking and getting a feel for it. You folks seem pretty darn NICE!!!My name is Donna. Wife to , Sr for 41 years; Mother to , Jr(40yo), Aimee(39yo) and Charlie(33yo) ; Grandmother to Silas(7yo), Abigail(4yo) , and Pippa & Jasper(2yo). THEY (all of the previous) are the joys in my life, for sure!! I was first diagnosed with Pulmonary Hypertension in Sept 2003. Was immediately admitted to the hospital on what I thought would be a routine visit for bronchitis. I had put off going to the doctor for about 8 or 9 months because of insurance change and having to find a new doctor. When on one Saturday afternoon when trying to change bedding on a twin size bed I became VERY SOB and felt I was about to pass out. I had had SOB for a year or more but because it came on fast but went away just as fast I more or less ignored it. That Saturday it was different ... I didn't like

the way my legs went limp and I had to grab onto my desk til the feeling passed. I called a doctor 'from accepted list' on Monday, got in to see him on Tuesday and as stated before was admitted to hospital right then and there. The PCP doc came into my room that night and told me it appeared I had PH and was bringing in Pulmo to my case. I called home and asked my son to see what he could find on the internet about PH -- I had never heard of it, but still had no idea it was so serious. My son brought print-offs to me that night and it scared me -- saying death within 5 years of diagnosis. OMG ... how could this be happening? Needless to say, I believe I was in shock.. LOLThe next couple of days in the hospital I was put thru a battery of tests: echos, CTs, Blood Work, PFT, and others I forget now. Seems I spent little time in my room.After a week in the hospital I was released with oxygen 3lpn 24/7. That is first time I cried --- just the sound

of the concentrator. My mother and father had both died on a ventilator and the sound was so 'the same' that I just sat down on my bed and let the tears flow.The doctors were reluctant to put a cause to my PH, but kept referring to my taking of the diet drug Fen-Phen ....... which I took for maybe at most 3 months. I stopped when the doctor who was prescribing to me mentioned that I had a heart murmur which I NEVER had before even tho I did have a heart attack in 1989. Still, my cardio docs never mentioned a murmur, so I said WHOA to myself and stopped the Fen-Phen.During office visit with Pulmo, I was put on Prednisone. Being naive -- I had not found forums at that time -- I was just going along with whatever the doctors said. Heck, they just HAD to know more than me, cause I knew nothing. Then Pulmo suggested a biopsy. His words being "Something else is going on with your lungs. We can continue to treat with Pred and hope for the best

or we can do the biopsy and be sure." Heck, I wanted 'to be sure' not a hit and a miss treatment. I went into hospital to have biopsy 2 days before Thanksgiving in 2003. I only spent one night in hospital. My drainage tube came out on it's own, so I was sent home on Thanksgiving Eve. That was the BEST and worst Thanksgiving in opposite pole ways. I had some discomfort, called the surgeon and went for office visit at their request. The surgeon is the one who gave me the diagnosis of PF on that visit. Again, I was shocked. I do remember saying to him "Well, at least it's not cancer" The look on his face was not good. I said, "Would cancer be better?" He just sorta nodded his head -- not a full blown yes, mind you. Again, the tears flowed. In an attempt to shorten this novel. LOL ... let me say that the doctors (and I even went to Vanderbilt for evaluation to be placed in a study there) ALL said that the PH and PF were independent of one another. I

to this day do not know how they made that determination. Because I was unable to give them yes answers to the questions they asked, it was determined I had IPF and PPH!!I am not a candidate for transplant because of the PPH and my heart condition. Soooo, that is where I stand. Presently taking a fistful of meds daily, one being Tracleer for the PH, but I understand it is now being considered for the treatment of PF also. I, on that basis, believe that drug is more than likely what has hald me 'steady' up until recently.I have an appt with my Pulmo on May 1st after a year and I feel as tho we might see some progression. I know I don't feel so good the past 3-4 months, yet not bad enough to schedule an earlier appointment. We shall see. Could be something else entirely.Due to the Pred, I now also have diabetes, neuropathy, cataracts. Seems it's always something. Either I can't sleep at all or I sleep too much ---- Can't eat at all or

can't get enough to eat. I have to laugh at myself and the turns my body takes or I would go nutz!Thanks for hanging with me on this long diatribe .... I promise my future posts will be shorter. ROFLGod Bless you all ....... you may be new to me but you are all in my prayers and I hope you will add me to yours. It's a hideous disease. I hate it!!! (and don't use the word hate much ... taught my kids it was the 'devil's word' and they should say strongly dislike -- LOL ... so that shows you exactly how I feel)

[Guest guest]

Welcome Donna,

You've had a very tough introduction to PF.. starting off with PH n' all. I'm glad that Tracleer seems to be working. It's called Bosentan here in Australia & the trials do seem to be holding out some promise for PF.

You've got a great line up of littlies to give you incentive to stick around.....may the fight be with you!

Feel free to join us on the cyberspace Easter Picnic.. you'll get to meet us all having fun & a bit of distraction that way1

Regards,

in Australia

IPF: Fibrotic NSIP/UIP?????

Raynauds

May 2007

Ro52

May 2008

>> Hi All ...> I'm fairly new to the board ... Have been lurking and getting a feel for it. You folks seem pretty darn NICE!!!> > My name is Donna. Wife to , Sr for 41 years; Mother to , Jr(40yo), Aimee(39yo) and Charlie(33yo); Grandmother to Silas(7yo), Abigail(4yo), and Pippa & Jasper(2yo). THEY (all of the previous) are the joys in my life, for sure!! > > I was first diagnosed with Pulmonary Hypertension in Sept 2003. Was immediately admitted to the hospital on what I thought would be a routine visit for bronchitis. I had put off going to the doctor for about 8 or 9 months because of insurance change and having to find a new doctor. When on one Saturday afternoon when trying to change bedding on a twin size bed I became VERY SOB and felt I was about to pass out. I had had SOB for a year or more but because it came on fast but went away just as fast I more or less ignored it. That Saturday it was different ... I didn't like the way my legs went limp and I had to grab onto my desk til the feeling passed. I called a doctor 'from accepted list' on Monday, got in to see him on Tuesday and as stated before was admitted to hospital right then and there. The PCP doc came into my room that night and told me it appeared I had PH and was bringing in Pulmo to my case. I called home and asked my son to see what he could find on the internet about PH -- I had never heard of it, but still had no idea it was so serious. My son brought print-offs to me that night and it scared me -- saying death within 5 years of diagnosis. OMG ... how could this be happening? Needless to say, I believe I was in shock. LOL> The next couple of days in the hospital I was put thru a battery of tests: echos, CTs, Blood Work, PFT, and others I forget now. Seems I spent little time in my room.> After a week in the hospital I was released with oxygen 3lpn 24/7. That is first time I cried --- just the sound of the concentrator. My mother and father had both died on a ventilator and the sound was so 'the same' that I just sat down on my bed and let the tears flow.> > The doctors were reluctant to put a cause to my PH, but kept referring to my taking of the diet drug Fen-Phen ....... which I took for maybe at most 3 months. I stopped when the doctor who was prescribing to me mentioned that I had a heart murmur which I NEVER had before even tho I did have a heart attack in 1989. Still, my cardio docs never mentioned a murmur, so I said WHOA to myself and stopped the Fen-Phen.> > During office visit with Pulmo, I was put on Prednisone. Being naive -- I had not found forums at that time -- I was just going along with whatever the doctors said. Heck, they just HAD to know more than me, cause I knew nothing. Then Pulmo suggested a biopsy. His words being "Something else is going on with your lungs. We can continue to treat with Pred and hope for the best or we can do the biopsy and be sure." Heck, I wanted 'to be sure' not a hit and a miss treatment. I went into hospital to have biopsy 2 days before Thanksgiving in 2003. I only spent one night in hospital. My drainage tube came out on it's own, so I was sent home on Thanksgiving Eve. That was the BEST and worst Thanksgiving in opposite pole ways. I had some discomfort, called the surgeon and went for office visit at their request. The surgeon is the one who gave me the diagnosis of PF on that visit. Again, I was shocked. I do remember saying to him "Well, at least it's not cancer" The look on his face was not good. I said, "Would cancer be better?" He just sorta nodded his head -- not a full blown yes, mind you. Again, the tears flowed. > > In an attempt to shorten this novel. LOL ... let me say that the doctors (and I even went to Vanderbilt for evaluation to be placed in a study there) ALL said that the PH and PF were independent of one another. I to this day do not know how they made that determination. Because I was unable to give them yes answers to the questions they asked, it was determined I had IPF and PPH!!> > I am not a candidate for transplant because of the PPH and my heart condition. Soooo, that is where I stand. Presently taking a fistful of meds daily, one being Tracleer for the PH, but I understand it is now being considered for the treatment of PF also. I, on that basis, believe that drug is more than likely what has hald me 'steady' up until recently.> > I have an appt with my Pulmo on May 1st after a year and I feel as tho we might see some progression. I know I don't feel so good the past 3-4 months, yet not bad enough to schedule an earlier appointment. We shall see. Could be something else entirely.> Due to the Pred, I now also have diabetes, neuropathy, cataracts. Seems it's always something. Either I can't sleep at all or I sleep too much ---- Can't eat at all or can't get enough to eat. I have to laugh at myself and the turns my body takes or I would go nutz!> > Thanks for hanging with me on this long diatribe .... I promise my future posts will be shorter. ROFL> > God Bless you all ....... you may be new to me but you are all in my prayers and I hope you will add me to yours. It's a hideous disease. I hate it!!! (and don't use the word hate much ... taught my kids it was the 'devil's word' and they should say strongly dislike -- LOL ... so that shows you exactly how I feel)>

[Guest guest]

Clothing, too? I think that I will wear a halter top, shorts and flip flops to go with my perfect virtual body. Beverley Joy 70/IPF/ 1-09 Idaho

New To Board

Hi All ...I'm fairly new to the board ... Have been lurking and getting a feel for it. You folks seem pretty darn NICE!!!My name is Donna. Wife to , Sr for 41 years; Mother to , Jr(40yo), Aimee(39yo) and Charlie(33yo) ; Grandmother to Silas(7yo), Abigail(4yo) , and Pippa & Jasper(2yo). THEY (all of the previous) are the joys in my life, for sure!! I was first diagnosed with Pulmonary Hypertension in Sept 2003. Was immediately admitted to the hospital on what I thought would be a routine visit for bronchitis. I had put off going to the doctor for about 8 or 9 months because of insurance change and having to find a new doctor. When on one Saturday afternoon when trying to change bedding on a twin size bed I became VERY SOB and felt I was about to pass out. I had had SOB for a year or more but because it came on fast but went away just as fast I more or less ignored it. That Saturday it was different ... I didn't like the way my legs went limp and I had to grab onto my desk til the feeling passed. I called a doctor 'from accepted list' on Monday, got in to see him on Tuesday and as stated before was admitted to hospital right then and there. The PCP doc came into my room that night and told me it appeared I had PH and was bringing in Pulmo to my case. I called home and asked my son to see what he could find on the internet about PH -- I had never heard of it, but still had no idea it was so serious. My son brought print-offs to me that night and it scared me -- saying death within 5 years of diagnosis. OMG ... how could this be happening? Needless to say, I believe I was in shock.. LOLThe next couple of days in the hospital I was put thru a battery of tests: echos, CTs, Blood Work, PFT, and others I forget now. Seems I spent little time in my room.After a week in the hospital I was released with oxygen 3lpn 24/7. That is first time I cried --- just the sound of the concentrator. My mother and father had both died on a ventilator and the sound was so 'the same' that I just sat down on my bed and let the tears flow.The doctors were reluctant to put a cause to my PH, but kept referring to my taking of the diet drug Fen-Phen ....... which I took for maybe at most 3 months. I stopped when the doctor who was prescribing to me mentioned that I had a heart murmur which I NEVER had before even tho I did have a heart attack in 1989. Still, my cardio docs never mentioned a murmur, so I said WHOA to myself and stopped the Fen-Phen.During office visit with Pulmo, I was put on Prednisone. Being naive -- I had not found forums at that time -- I was just going along with whatever the doctors said. Heck, they just HAD to know more than me, cause I knew nothing. Then Pulmo suggested a biopsy. His words being "Something else is going on with your lungs. We can continue to treat with Pred and hope for the best or we can do the biopsy and be sure." Heck, I wanted 'to be sure' not a hit and a miss treatment. I went into hospital to have biopsy 2 days before Thanksgiving in 2003. I only spent one night in hospital. My drainage tube came out on it's own, so I was sent home on Thanksgiving Eve. That was the BEST and worst Thanksgiving in opposite pole ways. I had some discomfort, called the surgeon and went for office visit at their request. The surgeon is the one who gave me the diagnosis of PF on that visit. Again, I was shocked. I do remember saying to him "Well, at least it's not cancer" The look on his face was not good. I said, "Would cancer be better?" He just sorta nodded his head -- not a full blown yes, mind you. Again, the tears flowed. In an attempt to shorten this novel. LOL ... let me say that the doctors (and I even went to Vanderbilt for evaluation to be placed in a study there) ALL said that the PH and PF were independent of one another. I to this day do not know how they made that determination. Because I was unable to give them yes answers to the questions they asked, it was determined I had IPF and PPH!!I am not a candidate for transplant because of the PPH and my heart condition. Soooo, that is where I stand. Presently taking a fistful of meds daily, one being Tracleer for the PH, but I understand it is now being considered for the treatment of PF also. I, on that basis, believe that drug is more than likely what has hald me 'steady' up until recently.I have an appt with my Pulmo on May 1st after a year and I feel as tho we might see some progression. I know I don't feel so good the past 3-4 months, yet not bad enough to schedule an earlier appointment. We shall see. Could be something else entirely.Due to the Pred, I now also have diabetes, neuropathy, cataracts. Seems it's always something. Either I can't sleep at all or I sleep too much ---- Can't eat at all or can't get enough to eat. I have to laugh at myself and the turns my body takes or I would go nutz!Thanks for hanging with me on this long diatribe .... I promise my future posts will be shorter. ROFLGod Bless you all ....... you may be new to me but you are all in my prayers and I hope you will add me to yours. It's a hideous disease. I hate it!!! (and don't use the word hate much ... taught my kids it was the 'devil's word' and they should say strongly dislike -- LOL ... so that shows you exactly how I feel)

[Guest guest]

Clothing, too? I think that I will wear a halter top, shorts and flip flops to go with my perfect virtual body. Beverley Joy 70/IPF/ 1-09 Idaho

New To Board

Hi All ...I'm fairly new to the board ... Have been lurking and getting a feel for it. You folks seem pretty darn NICE!!!My name is Donna. Wife to , Sr for 41 years; Mother to , Jr(40yo), Aimee(39yo) and Charlie(33yo) ; Grandmother to Silas(7yo), Abigail(4yo) , and Pippa & Jasper(2yo). THEY (all of the previous) are the joys in my life, for sure!! I was first diagnosed with Pulmonary Hypertension in Sept 2003. Was immediately admitted to the hospital on what I thought would be a routine visit for bronchitis. I had put off going to the doctor for about 8 or 9 months because of insurance change and having to find a new doctor. When on one Saturday afternoon when trying to change bedding on a twin size bed I became VERY SOB and felt I was about to pass out. I had had SOB for a year or more but because it came on fast but went away just as fast I more or less ignored it. That Saturday it was different ... I didn't like the way my legs went limp and I had to grab onto my desk til the feeling passed. I called a doctor 'from accepted list' on Monday, got in to see him on Tuesday and as stated before was admitted to hospital right then and there. The PCP doc came into my room that night and told me it appeared I had PH and was bringing in Pulmo to my case. I called home and asked my son to see what he could find on the internet about PH -- I had never heard of it, but still had no idea it was so serious. My son brought print-offs to me that night and it scared me -- saying death within 5 years of diagnosis. OMG ... how could this be happening? Needless to say, I believe I was in shock.. LOLThe next couple of days in the hospital I was put thru a battery of tests: echos, CTs, Blood Work, PFT, and others I forget now. Seems I spent little time in my room.After a week in the hospital I was released with oxygen 3lpn 24/7. That is first time I cried --- just the sound of the concentrator. My mother and father had both died on a ventilator and the sound was so 'the same' that I just sat down on my bed and let the tears flow.The doctors were reluctant to put a cause to my PH, but kept referring to my taking of the diet drug Fen-Phen ....... which I took for maybe at most 3 months. I stopped when the doctor who was prescribing to me mentioned that I had a heart murmur which I NEVER had before even tho I did have a heart attack in 1989. Still, my cardio docs never mentioned a murmur, so I said WHOA to myself and stopped the Fen-Phen.During office visit with Pulmo, I was put on Prednisone. Being naive -- I had not found forums at that time -- I was just going along with whatever the doctors said. Heck, they just HAD to know more than me, cause I knew nothing. Then Pulmo suggested a biopsy. His words being "Something else is going on with your lungs. We can continue to treat with Pred and hope for the best or we can do the biopsy and be sure." Heck, I wanted 'to be sure' not a hit and a miss treatment. I went into hospital to have biopsy 2 days before Thanksgiving in 2003. I only spent one night in hospital. My drainage tube came out on it's own, so I was sent home on Thanksgiving Eve. That was the BEST and worst Thanksgiving in opposite pole ways. I had some discomfort, called the surgeon and went for office visit at their request. The surgeon is the one who gave me the diagnosis of PF on that visit. Again, I was shocked. I do remember saying to him "Well, at least it's not cancer" The look on his face was not good. I said, "Would cancer be better?" He just sorta nodded his head -- not a full blown yes, mind you. Again, the tears flowed. In an attempt to shorten this novel. LOL ... let me say that the doctors (and I even went to Vanderbilt for evaluation to be placed in a study there) ALL said that the PH and PF were independent of one another. I to this day do not know how they made that determination. Because I was unable to give them yes answers to the questions they asked, it was determined I had IPF and PPH!!I am not a candidate for transplant because of the PPH and my heart condition. Soooo, that is where I stand. Presently taking a fistful of meds daily, one being Tracleer for the PH, but I understand it is now being considered for the treatment of PF also. I, on that basis, believe that drug is more than likely what has hald me 'steady' up until recently.I have an appt with my Pulmo on May 1st after a year and I feel as tho we might see some progression. I know I don't feel so good the past 3-4 months, yet not bad enough to schedule an earlier appointment. We shall see. Could be something else entirely.Due to the Pred, I now also have diabetes, neuropathy, cataracts. Seems it's always something. Either I can't sleep at all or I sleep too much ---- Can't eat at all or can't get enough to eat. I have to laugh at myself and the turns my body takes or I would go nutz!Thanks for hanging with me on this long diatribe .... I promise my future posts will be shorter. ROFLGod Bless you all ....... you may be new to me but you are all in my prayers and I hope you will add me to yours. It's a hideous disease. I hate it!!! (and don't use the word hate much ... taught my kids it was the 'devil's word' and they should say strongly dislike -- LOL ... so that shows you exactly how I feel)