Re: Hi I am a newbie to the site, some help please

[Guest guest]

Kyetia, You must be scared to death. I certainly hope you get an accurate diagnosis and oxygen on Wednesday. How on earth could you have been so sick so often and seen different doctors during your hospital stays and yet no one has found the true diagnosis??? I have an appointment with my pulmonologist tomorrow so I need to get some sleep now. I will keep you in my thoughts and prayers. Margaret

Pneumonitis, PH, COPD, PF and heart and lung failure...depression

To: Breathe-Support Sent: Monday, March 2, 2009 8:40:56 PMSubject: Hi I am a newbie to the site, some help please

My journey started 2 years ago wwhen I had a UTI I did not know I had went to the E.R. cause of a really bad head ache work up 8 days later on life support and I haven't been right since. I had been see the Doctor that had taken care of me in the hospital and at first he did really good, he put me on sprivia, advair and xeopenox but things just kept getting worse I;ve been in the shopital14 times in 2 years and they all say its pnuemonia. Well I changed doctors and this doc really got on the ball, first he did alot of blood work the a bronc. and then an open biopsy which showed I was approaching end stage Pulmonary Fibrosis, and had DIP, Idiopathic pulmonary fibrosis, aspergillous versicolor, and a few others that doesn't come to mind right now. Well my new pulmo.suggested I go to a University in Atlanta at Emory Hosptial, I went and took all the papers, test, cat scans and the path department here

overnight my biopsy slides to them and they re read them and came up with a totally diferent diagonsis, so now I have two different opions and still no answers, I go see my reg pulmo on Wed, kind of courious what he is going to say and do. Atlanta put me on a 90 days supply of predisone 30mg a day. Walking from the bathroom to the ditchen which isn't very far without o2 my sats will drop in the low eighties. going to the car I'm usually in the sixties before I get in to it, the docs in Atlanta I felt like just dismissed it as being nothing but I don't feel its nothing and I've already been on life support once. Guess will see on Wed. THanks for listening.Kyetia

[Guest guest]

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, March 3, 2009 12:40:56 AMSubject: Hi I am a newbie to the site, some help please

My journey started 2 years ago wwhen I had a UTI I did not know I had went to the E.R. cause of a really bad head ache work up 8 days later on life support and I haven't been right since. I had been see the Doctor that had taken care of me in the hospital and at first he did really good, he put me on sprivia, advair and xeopenox but things just kept getting worse I;ve been in the shopital14 times in 2 years and they all say its pnuemonia. Well I changed doctors and this doc really got on the ball, first he did alot of blood work the a bronc. and then an open biopsy which showed I was approaching end stage Pulmonary Fibrosis, and had DIP, Idiopathic pulmonary fibrosis, aspergillous versicolor, and a few others that doesn't come to mind right now. Well my new pulmo.suggested I go to a University in Atlanta at Emory Hosptial, I went and took all the papers, test, cat scans and the path department here

overnight my biopsy slides to them and they re read them and came up with a totally diferent diagonsis, so now I have two different opions and still no answers, I go see my reg pulmo on Wed, kind of courious what he is going to say and do. Atlanta put me on a 90 days supply of predisone 30mg a day. Walking from the bathroom to the ditchen which isn't very far without o2 my sats will drop in the low eighties. going to the car I'm usually in the sixties before I get in to it, the docs in Atlanta I felt like just dismissed it as being nothing but I don't feel its nothing and I've already been on life support once. Guess will see on Wed. THanks for listening.Kyetia

[Guest guest]

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, March 3, 2009 12:40:56 AMSubject: Hi I am a newbie to the site, some help please

My journey started 2 years ago wwhen I had a UTI I did not know I had went to the E.R. cause of a really bad head ache work up 8 days later on life support and I haven't been right since. I had been see the Doctor that had taken care of me in the hospital and at first he did really good, he put me on sprivia, advair and xeopenox but things just kept getting worse I;ve been in the shopital14 times in 2 years and they all say its pnuemonia. Well I changed doctors and this doc really got on the ball, first he did alot of blood work the a bronc. and then an open biopsy which showed I was approaching end stage Pulmonary Fibrosis, and had DIP, Idiopathic pulmonary fibrosis, aspergillous versicolor, and a few others that doesn't come to mind right now. Well my new pulmo.suggested I go to a University in Atlanta at Emory Hosptial, I went and took all the papers, test, cat scans and the path department here

overnight my biopsy slides to them and they re read them and came up with a totally diferent diagonsis, so now I have two different opions and still no answers, I go see my reg pulmo on Wed, kind of courious what he is going to say and do. Atlanta put me on a 90 days supply of predisone 30mg a day. Walking from the bathroom to the ditchen which isn't very far without o2 my sats will drop in the low eighties. going to the car I'm usually in the sixties before I get in to it, the docs in Atlanta I felt like just dismissed it as being nothing but I don't feel its nothing and I've already been on life support once. Guess will see on Wed. THanks for listening.Kyetia

[Guest guest]

This is . I live in Windsor, Ontario Canada. I was diagnosed in March 2008.Sent on the TELUS Mobility network with BlackBerryFrom: Beth Date: Tue, 3 Mar 2009 08:07:04 -0800 (PST)To: <Breathe-Support >Subject: Re: Hi I am a newbie to the site, some help please BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08From: kyetiaw <kyetiaw (AT) yahoo (DOT) com>To: Breathe-Support Sent: Tuesday, March 3, 2009 12:40:56 AMSubject: Hi I am a newbie to the site, some help pleaseMy journey started 2 years ago wwhen I had a UTI I did not know I had went to the E.R. cause of a really bad head ache work up 8 days later on life support and I haven't been right since. I had been see the Doctor that had taken care of me in the hospital and at first he did really good, he put me on sprivia, advair and xeopenox but things just kept getting worse I;ve been in the shopital14 times in 2 years and they all say its pnuemonia. Well I changed doctors and this doc really got on the ball, first he did alot of blood work the a bronc. and then an open biopsy which showed I was approaching end stage Pulmonary Fibrosis, and had DIP, Idiopathic pulmonary fibrosis, aspergillous versicolor, and a few others that doesn't come to mind right now. Well my new pulmo.suggested I go to a University in Atlanta at Emory Hosptial, I went and took all the papers, test, cat scans and the path department here overnight my biopsy slides to them and they re read them and came up with a totally diferent diagonsis, so now I have two different opions and still no answers, I go see my reg pulmo on Wed, kind of courious what he is going to say and do. Atlanta put me on a 90 days supply of predisone 30mg a day. Walking from the bathroom to the ditchen which isn't very far without o2 my sats will drop in the low eighties. going to the car I'm usually in the sixties before I get in to it, the docs in Atlanta I felt like just dismissed it as being nothing but I don't feel its nothing and I've already been on life support once. Guess will see on Wed. THanks for listening.Kyetia

[Guest guest]

This is . I live in Windsor, Ontario Canada. I was diagnosed in March 2008.Sent on the TELUS Mobility network with BlackBerryFrom: Beth Date: Tue, 3 Mar 2009 08:07:04 -0800 (PST)To: <Breathe-Support >Subject: Re: Hi I am a newbie to the site, some help please BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08From: kyetiaw <kyetiaw (AT) yahoo (DOT) com>To: Breathe-Support Sent: Tuesday, March 3, 2009 12:40:56 AMSubject: Hi I am a newbie to the site, some help pleaseMy journey started 2 years ago wwhen I had a UTI I did not know I had went to the E.R. cause of a really bad head ache work up 8 days later on life support and I haven't been right since. I had been see the Doctor that had taken care of me in the hospital and at first he did really good, he put me on sprivia, advair and xeopenox but things just kept getting worse I;ve been in the shopital14 times in 2 years and they all say its pnuemonia. Well I changed doctors and this doc really got on the ball, first he did alot of blood work the a bronc. and then an open biopsy which showed I was approaching end stage Pulmonary Fibrosis, and had DIP, Idiopathic pulmonary fibrosis, aspergillous versicolor, and a few others that doesn't come to mind right now. Well my new pulmo.suggested I go to a University in Atlanta at Emory Hosptial, I went and took all the papers, test, cat scans and the path department here overnight my biopsy slides to them and they re read them and came up with a totally diferent diagonsis, so now I have two different opions and still no answers, I go see my reg pulmo on Wed, kind of courious what he is going to say and do. Atlanta put me on a 90 days supply of predisone 30mg a day. Walking from the bathroom to the ditchen which isn't very far without o2 my sats will drop in the low eighties. going to the car I'm usually in the sixties before I get in to it, the docs in Atlanta I felt like just dismissed it as being nothing but I don't feel its nothing and I've already been on life support once. Guess will see on Wed. THanks for listening.Kyetia

[Guest guest]

Kyetia,

Good morning and welcome to Breathe Support. You have reached a place where there are lots of people who understand how you are feeling. We 'get it' because we've been in your shoes.

The most useful thing I can tell you right now is to use your oxygen! Do not allow your sats to drop in the the 80's and never into the 60's when you have oxygen available to use. Having sats that low causes damage to your body. We use supplemental O2 to keep our sats above 90 in order to protect the rest of our organs from oxygen deprivation. It's essential to do this!

The other thing I would suggest is to keep a list of questions you want to ask your doctor. Ask the questions and don't leave the office until you have answers that you understand.

I'm glad you went to Emory to be evaluated. It's an excellent facility with specialists in these diseases. We have several members who receive their care at Emory. I will be interested to know what your pulmo says about Emory's opinions. Please keep us posted and know that we are in your corner!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, March 3, 2009 12:40:56 AMSubject: Hi I am a newbie to the site, some help please

My journey started 2 years ago wwhen I had a UTI I did not know I had went to the E.R. cause of a really bad head ache work up 8 days later on life support and I haven't been right since. I had been see the Doctor that had taken care of me in the hospital and at first he did really good, he put me on sprivia, advair and xeopenox but things just kept getting worse I;ve been in the shopital14 times in 2 years and they all say its pnuemonia. Well I changed doctors and this doc really got on the ball, first he did alot of blood work the a bronc. and then an open biopsy which showed I was approaching end stage Pulmonary Fibrosis, and had DIP, Idiopathic pulmonary fibrosis, aspergillous versicolor, and a few others that doesn't come to mind right now. Well my new pulmo.suggested I go to a University in Atlanta at Emory Hosptial, I went and took all the papers, test, cat scans and the path department here

overnight my biopsy slides to them and they re read them and came up with a totally diferent diagonsis, so now I have two different opions and still no answers, I go see my reg pulmo on Wed, kind of courious what he is going to say and do. Atlanta put me on a 90 days supply of predisone 30mg a day. Walking from the bathroom to the ditchen which isn't very far without o2 my sats will drop in the low eighties. going to the car I'm usually in the sixties before I get in to it, the docs in Atlanta I felt like just dismissed it as being nothing but I don't feel its nothing and I've already been on life support once. Guess will see on Wed. THanks for listening.Kyetia

[Guest guest]

Hi .. I call you blackberry cause that comes on the board..lolWe are glad to have you here but so saddened by the reason. Take care of you and God Bless you. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  This is . I live in Windsor, Ontario Canada. I was diagnosed in March 2008.Sent on the TELUS Mobility network with BlackBerryFrom: Beth Date: Tue, 3 Mar 2009 08:07:04 -0800 (PST)To: <Breathe-Support >Subject: Re: Hi I am a newbie to the site, some help please  BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08From: kyetiaw <kyetiaw (AT) yahoo (DOT) com>To: Breathe-Support Sent: Tuesday, March 3, 2009 12:40:56 AMSubject:  Hi I am a newbie to the site, some help pleaseMy journey started 2 years ago wwhen I had a UTI I did not know I had went to the E.R. cause of a really bad head ache work up 8 days later on life support and I haven't been right since. I had been see the Doctor that had taken care of me in the hospital and at first he did really good, he put me on sprivia, advair and xeopenox but thingsjust kept getting worse I;ve been in the shopital14 times in 2 years and they all say its pnuemonia. Well I changed doctors and this doc really got on the ball, first he did alot of blood work the a bronc. and then an open biopsy which showed I was approaching end stage Pulmonary Fibrosis, and had DIP, Idiopathic pulmonary fibrosis, aspergillous versicolor, and a few others that doesn't come to mind right now. Well my new pulmo.suggested I go to a University in Atlanta at Emory Hosptial, I went and took all the papers, test, cat scans and the path department here overnight my biopsy slides to them and they re read them and came up with a totally diferent diagonsis, so now I have two different opions and still no answers, I go see my reg pulmo on Wed, kind of courious what he is going to say and do. Atlanta put me on a 90 days supply of predisone 30mg a day. Walking from the bathroom to the ditchen which isn't very far without o2 my sats will drop in the low eighties. going to the car I'm usually in the sixties before I get in to it, the docs in Atlanta I felt like just dismissed it as being nothing but I don't feel its nothing and I've already been on life support once. Guess will see on Wed. THanks for listening.Kyetia

[Guest guest]

Hi .. I call you blackberry cause that comes on the board..lolWe are glad to have you here but so saddened by the reason. Take care of you and God Bless you. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  This is . I live in Windsor, Ontario Canada. I was diagnosed in March 2008.Sent on the TELUS Mobility network with BlackBerryFrom: Beth Date: Tue, 3 Mar 2009 08:07:04 -0800 (PST)To: <Breathe-Support >Subject: Re: Hi I am a newbie to the site, some help please  BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08From: kyetiaw <kyetiaw (AT) yahoo (DOT) com>To: Breathe-Support Sent: Tuesday, March 3, 2009 12:40:56 AMSubject:  Hi I am a newbie to the site, some help pleaseMy journey started 2 years ago wwhen I had a UTI I did not know I had went to the E.R. cause of a really bad head ache work up 8 days later on life support and I haven't been right since. I had been see the Doctor that had taken care of me in the hospital and at first he did really good, he put me on sprivia, advair and xeopenox but thingsjust kept getting worse I;ve been in the shopital14 times in 2 years and they all say its pnuemonia. Well I changed doctors and this doc really got on the ball, first he did alot of blood work the a bronc. and then an open biopsy which showed I was approaching end stage Pulmonary Fibrosis, and had DIP, Idiopathic pulmonary fibrosis, aspergillous versicolor, and a few others that doesn't come to mind right now. Well my new pulmo.suggested I go to a University in Atlanta at Emory Hosptial, I went and took all the papers, test, cat scans and the path department here overnight my biopsy slides to them and they re read them and came up with a totally diferent diagonsis, so now I have two different opions and still no answers, I go see my reg pulmo on Wed, kind of courious what he is going to say and do. Atlanta put me on a 90 days supply of predisone 30mg a day. Walking from the bathroom to the ditchen which isn't very far without o2 my sats will drop in the low eighties. going to the car I'm usually in the sixties before I get in to it, the docs in Atlanta I felt like just dismissed it as being nothing but I don't feel its nothing and I've already been on life support once. Guess will see on Wed. THanks for listening.Kyetia

[Guest guest]

Kyetia...My goodness you have and are going through so much. I'm sorry you don't at least have some answers after all this.

I'll let those who are more knowledgeable reply.

I just want to welcome you to our board. I'm sure you will get at least some answers/explanations here...Bruce is always researching and has good information. Beth, our moderator, is good to answer and she is a retired nurse as well.

Many more.....

Keep on keepin' on. I'll watch for your posts.

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

Hi I am a newbie to the site, some help please

My journey started 2 years ago wwhen I had a UTI I did not know I had went to the E.R. cause of a really bad head ache work up 8 days later on life support and I haven't been right since. I had been see the Doctor that had taken care of me in the hospital and at first he did really good, he put me on sprivia, advair and xeopenox but things just kept getting worse I;ve been in the shopital14 times in 2 years and they all say its pnuemonia. Well I changed doctors and this doc really got on the ball, first he did alot of blood work the a bronc. and then an open biopsy which showed I was approaching end stage Pulmonary Fibrosis, and had DIP, Idiopathic pulmonary fibrosis, aspergillous versicolor, and a few others that doesn't come to mind right now. Well my new pulmo.suggested I go to a University in Atlanta at Emory Hosptial, I went and took all the papers, test, cat scans and the path department here overnight my biopsy slides to them and they re read them and came up with a totally diferent diagonsis, so now I have two different opions and still no answers, I go see my reg pulmo on Wed, kind of courious what he is going to say and do. Atlanta put me on a 90 days supply of predisone 30mg a day. Walking from the bathroom to the ditchen which isn't very far without o2 my sats will drop in the low eighties. going to the car I'm usually in the sixties before I get in to it, the docs in Atlanta I felt like just dismissed it as being nothing but I don't feel its nothing and I've already been on life support once. Guess will see on Wed. THanks for listening.Kyetia

[Guest guest]

Kyetia...My goodness you have and are going through so much. I'm sorry you don't at least have some answers after all this.

I'll let those who are more knowledgeable reply.

I just want to welcome you to our board. I'm sure you will get at least some answers/explanations here...Bruce is always researching and has good information. Beth, our moderator, is good to answer and she is a retired nurse as well.

Many more.....

Keep on keepin' on. I'll watch for your posts.

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

Hi I am a newbie to the site, some help please

My journey started 2 years ago wwhen I had a UTI I did not know I had went to the E.R. cause of a really bad head ache work up 8 days later on life support and I haven't been right since. I had been see the Doctor that had taken care of me in the hospital and at first he did really good, he put me on sprivia, advair and xeopenox but things just kept getting worse I;ve been in the shopital14 times in 2 years and they all say its pnuemonia. Well I changed doctors and this doc really got on the ball, first he did alot of blood work the a bronc. and then an open biopsy which showed I was approaching end stage Pulmonary Fibrosis, and had DIP, Idiopathic pulmonary fibrosis, aspergillous versicolor, and a few others that doesn't come to mind right now. Well my new pulmo.suggested I go to a University in Atlanta at Emory Hosptial, I went and took all the papers, test, cat scans and the path department here overnight my biopsy slides to them and they re read them and came up with a totally diferent diagonsis, so now I have two different opions and still no answers, I go see my reg pulmo on Wed, kind of courious what he is going to say and do. Atlanta put me on a 90 days supply of predisone 30mg a day. Walking from the bathroom to the ditchen which isn't very far without o2 my sats will drop in the low eighties. going to the car I'm usually in the sixties before I get in to it, the docs in Atlanta I felt like just dismissed it as being nothing but I don't feel its nothing and I've already been on life support once. Guess will see on Wed. THanks for listening.Kyetia