Re: 55 year old male Montreal idiopathic pulmonary fibrosis

[Guest guest]

Hi,

First off would you share your name with us? My name is Beth and I am the moderator of the board. I will be 50 next month and I was diagnosed about 3 years ago after a couple of years of mis-diagnosis and treatment for asthma and allergies not so very different from what you experienced.

It sounds like you are being worked up thoroughly. I hope that they can get you some definitive answers and find something that can help you. If you have an opportunity to participate in pulmonary rehab I think you might find it very helpful and empowering.

Please hang around and share as much as you feel comfortable sharing and ask whatever questions you want!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, June 14, 2009 8:17:32 PMSubject: 55 year old male Montreal idiopathic pulmonary fibrosis

As I expected I was diagnosed with IPF last week. The first clues were x-rays last January during and 1 month following what was said to be flu / pneumonia. I vacationed in the tropics and SCUBA dove once in March. The xrays after this were "abnormal" and fibrosis was said by my family doctor.After I went thru: Pulmonlogist, ct-scan, exercise test, breathing test, pulmonlogist, cardiologist, pulmonlogist and a diagnosis of IPF.I have to do 8 minute walk test and a cardia echography exercise tesPulmonologist said no effective treatments exist, 5-10% possibility with antiinflamatory drugs with lots oof side effects. Need to get me on transplant list quickly and see if I should get oxygen. I`ve been suspecting I had breathing problems since 2006 with the stairs at work. Prior to that in 2000 at high altitude when climbing inclines and my problems with summer heat. I had restarted SCUBA diving then. Last summer was

especially worrying. I had discomfort in my chest. I feel better in buildings with airconditioning. Outside today or with windows open I feel a warmth in my chest.Prior to all this I was using antihistamines & decongestants in 2007, I stopped. I was prescribed Nasonex, this gave me a cough and hurt my chest. Later Rhinocort & lozec. The Rhinocort gave me a cough. I stopped taking it in April and my coughing subsided 90%. I cough sometimes when I eat and clear post nasal drip caught in my nasal passage or throat.

[Guest guest]

pikpobedy

welcome, sorry you need us, glad you found us

are you going to a hospital with a department specializing in interstitial lung diseases?

do you have an oximeter, if not, someone on line will send you an email address for one

that way you can monitor your SAT's -- o2 saturation levels -- and you will know when you need to use o2

with this disease, many of us can sit without o2, but as soon as we move, walk, bend, etc

the SAT goes down and we need the o2

also many docs want us to wear it when sleeping, something about the breathing becoming shallow

i was on the active transplant list, since my disease is response to anti inflamatory meds, i am now on the inactive list, feeling better, and dealing with the side effects

pulmonary rehab is usually recommended and continued exercise is a must for many of us

someone else can explain the relationship between exercise and the amount of o2 the muscles need

i understand, but can't explain it

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: 55 year old male Montreal idiopathic pulmonary fibrosisTo: Breathe-Support Date: Sunday, June 14, 2009, 8:17 PM

As I expected I was diagnosed with IPF last week. The first clues were x-rays last January during and 1 month following what was said to be flu / pneumonia. I vacationed in the tropics and SCUBA dove once in March. The xrays after this were "abnormal" and fibrosis was said by my family doctor.After I went thru: Pulmonlogist, ct-scan, exercise test, breathing test, pulmonlogist, cardiologist, pulmonlogist and a diagnosis of IPF.I have to do 8 minute walk test and a cardia echography exercise tesPulmonologist said no effective treatments exist, 5-10% possibility with antiinflamatory drugs with lots oof side effects. Need to get me on transplant list quickly and see if I should get oxygen. I`ve been suspecting I had breathing problems since 2006 with the stairs at work. Prior to that in 2000 at high altitude when climbing inclines and my problems with summer heat. I had restarted SCUBA diving then. Last summer was

especially worrying. I had discomfort in my chest. I feel better in buildings with airconditioning. Outside today or with windows open I feel a warmth in my chest.Prior to all this I was using antihistamines & decongestants in 2007, I stopped. I was prescribed Nasonex, this gave me a cough and hurt my chest. Later Rhinocort & lozec. The Rhinocort gave me a cough. I stopped taking it in April and my coughing subsided 90%. I cough sometimes when I eat and clear post nasal drip caught in my nasal passage or throat.

[Guest guest]

Joyce: I am new to this group. May I asked what inflanatory drugs you are on. I would like to avoid using Pednisone.

To: Breathe-Support Sent: Monday, June 15, 2009 9:00:32 AMSubject: Re: 55 year old male Montreal idiopathic pulmonary fibrosis

pikpobedy

welcome, sorry you need us, glad you found us

are you going to a hospital with a department specializing in interstitial lung diseases?

do you have an oximeter, if not, someone on line will send you an email address for one

that way you can monitor your SAT's -- o2 saturation levels -- and you will know when you need to use o2

with this disease, many of us can sit without o2, but as soon as we move, walk, bend, etc

the SAT goes down and we need the o2

also many docs want us to wear it when sleeping, something about the breathing becoming shallow

i was on the active transplant list, since my disease is response to anti inflamatory meds, i am now on the inactive list, feeling better, and dealing with the side effects

pulmonary rehab is usually recommended and continued exercise is a must for many of us

someone else can explain the relationship between exercise and the amount of o2 the muscles need

i understand, but can't explain it

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: pikpobedy <pikpobedy (AT) yahoo (DOT) com>Subject: 55 year old male Montreal idiopathic pulmonary fibrosisTo: Breathe-Support@ yahoogroups. comDate: Sunday, June 14, 2009, 8:17 PM

As I expected I was diagnosed with IPF last week. The first clues were x-rays last January during and 1 month following what was said to be flu / pneumonia. I vacationed in the tropics and SCUBA dove once in March. The xrays after this were "abnormal" and fibrosis was said by my family doctor.After I went thru: Pulmonlogist, ct-scan, exercise test, breathing test, pulmonlogist, cardiologist, pulmonlogist and a diagnosis of IPF.I have to do 8 minute walk test and a cardia echography exercise tesPulmonologist said no effective treatments exist, 5-10% possibility with antiinflamatory drugs with lots oof side effects. Need to get me on transplant list quickly and see if I should get oxygen. I`ve been suspecting I had breathing problems since 2006 with the stairs at work. Prior to that in 2000 at high altitude when climbing inclines and my problems with summer heat. I had restarted SCUBA diving then. Last summer was

especially worrying. I had discomfort in my chest. I feel better in buildings with airconditioning. Outside today or with windows open I feel a warmth in my chest.Prior to all this I was using antihistamines & decongestants in 2007, I stopped. I was prescribed Nasonex, this gave me a cough and hurt my chest. Later Rhinocort & lozec. The Rhinocort gave me a cough. I stopped taking it in April and my coughing subsided 90%. I cough sometimes when I eat and clear post nasal drip caught in my nasal passage or throat.

[Guest guest]

john

after diagnosis i was on a "cocktail" of 10 mgs prednisone, NAC and imuran. when the imuran was increased i had a bad reaction, so that was stopped

however, imuran has been around for a very long time, and the generic is used alot -- az-something--too hard to pronounce and spell

i have had bad reactions to other drugs, so that is something with my body

[in fact, since going on imuran for his Crohn's, jerry has been able to come off of prednisone after about 30 years]after several months of 10 mgs prednisone, it was lowered to 7.5 mgs (fall 2006)

spring 2008, there was a change in my condition and prednisone was increased to 40 mgs

it worked, so the weaning process started

i forget how far down i got [maybe 15mgs], i started having problems again, so was increased to 40 mgs again, and since it was responsive, doc put me on Cellcept

now i am on Cellcept and prednisone 10 mgs and NAC

i am surprised that your docs kept you at such a high dose of prednisone

i think the NAC might help keep the lungs clear of fluids, but not sure if that is what it does

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: 55 year old male Montreal idiopathic pulmonary fibrosisTo: Breathe-Support Cc: "john burns" Date: Monday, June 15, 2009, 6:20 PM

Joyce: I am new to this group. May I asked what inflanatory drugs you are on. I would like to avoid using Pednisone.

From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Monday, June 15, 2009 9:00:32 AMSubject: Re: 55 year old male Montreal idiopathic pulmonary fibrosis

pikpobedy

welcome, sorry you need us, glad you found us

are you going to a hospital with a department specializing in interstitial lung diseases?

do you have an oximeter, if not, someone on line will send you an email address for one

that way you can monitor your SAT's -- o2 saturation levels -- and you will know when you need to use o2

with this disease, many of us can sit without o2, but as soon as we move, walk, bend, etc

the SAT goes down and we need the o2

also many docs want us to wear it when sleeping, something about the breathing becoming shallow

i was on the active transplant list, since my disease is response to anti inflamatory meds, i am now on the inactive list, feeling better, and dealing with the side effects

pulmonary rehab is usually recommended and continued exercise is a must for many of us

someone else can explain the relationship between exercise and the amount of o2 the muscles need

i understand, but can't explain it

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: pikpobedy <pikpobedy (AT) yahoo (DOT) com>Subject: 55 year old male Montreal idiopathic pulmonary fibrosisTo: Breathe-Support@ yahoogroups. comDate: Sunday, June 14, 2009, 8:17 PM

As I expected I was diagnosed with IPF last week. The first clues were x-rays last January during and 1 month following what was said to be flu / pneumonia. I vacationed in the tropics and SCUBA dove once in March. The xrays after this were "abnormal" and fibrosis was said by my family doctor.After I went thru: Pulmonlogist, ct-scan, exercise test, breathing test, pulmonlogist, cardiologist, pulmonlogist and a diagnosis of IPF.I have to do 8 minute walk test and a cardia echography exercise tesPulmonologist said no effective treatments exist, 5-10% possibility with antiinflamatory drugs with lots oof side effects. Need to get me on transplant list quickly and see if I should get oxygen. I`ve been suspecting I had breathing problems since 2006 with the stairs at work. Prior to that in 2000 at high altitude when climbing inclines and my problems with summer heat. I had restarted SCUBA diving then. Last summer was

especially worrying. I had discomfort in my chest. I feel better in buildings with airconditioning. Outside today or with windows open I feel a warmth in my chest.Prior to all this I was using antihistamines & decongestants in 2007, I stopped. I was prescribed Nasonex, this gave me a cough and hurt my chest. Later Rhinocort & lozec. The Rhinocort gave me a cough. I stopped taking it in April and my coughing subsided 90%. I cough sometimes when I eat and clear post nasal drip caught in my nasal passage or throat.

[Guest guest]

Hello Montreal,So sorry for your new diagnosis. Your close to my age. I've been on the run since April 2009 when they discovered PF on my CXR. Many tests. TypicalSOB with increased activity. Some days worse than others, especially humid days.I'm not on O2 yet. It's so true about pacing yourself. I went on a hike with my daughterand granddaughters that included some light climbing. I'm happy to report that I was able to do it, but at a slower pace than the others. But that's my favorite place to be, out in nature.Anyway as soon as I get my oximeter I'm going to keep a diary of activity and pulse oxreadings so when I go back to CCF in the fall I'll have something to show them. Sometimesit's difficult to remember when and where and how when the doctor asks questions.I was into see my medical doctor and he does not think my PF was caused by aspirationor reflux, but said he would order the gastric emptying time and HR esophageal manometry.So, I'm wondering should I do the tests or not? The doc at CCF wants me to. Newly diagnosed, I now realize I've had this for some time. The doctor said yesterday that I still havefine crackles sounds in my lung bases, but there is improvement. But this morning while I was lying on my left side' I could hear the crackles with each breathe I took. I realized then that I have heard that sound for at least two yearsand didn't realize what it was. Anyways try to stay positive! We're still here. I'll be hoping and praying everything works in your favor.All the best to you,,PJ 55 year old male Montreal idiopathic pulmonary fibrosisTo: Breathe-Support Date: Sunday, June 14, 2009, 8:17 PM

As I expected I was diagnosed with IPF last week. The first clues were x-rays last January during and 1 month following what was said to be flu / pneumonia. I vacationed in the tropics and SCUBA dove once in March. The xrays after this were "abnormal" and fibrosis was said by my family doctor.After I went thru: Pulmonlogist, ct-scan, exercise test, breathing test, pulmonlogist, cardiologist, pulmonlogist and a diagnosis of IPF.I have to do 8 minute walk test and a cardia echography exercise tesPulmonologist said no effective treatments exist, 5-10% possibility with antiinflamatory drugs with lots oof side effects. Need to get me on transplant list quickly and see if I should get oxygen. I`ve been suspecting I had breathing problems since 2006 with the stairs at work. Prior to that in 2000 at high altitude when climbing inclines and my problems with summer heat. I had restarted SCUBA diving then. Last summer wasespecially worrying. I had discomfort in my chest. I feel better in buildings with airconditioning. Outside today or with windows open I feel a warmth in my chest.Prior to all this I was using antihistamines & decongestants in 2007, I stopped. I was prescribed Nasonex, this gave me a cough and hurt my chest. Later Rhinocort & lozec. The Rhinocort gave me a cough. I stopped taking it in April and my coughing subsided 90%. I cough sometimes when I eat and clear post nasal drip caught in my nasal passage or throat.

[Guest guest]

"Anyway as soon as I get my oximeter I'm going to keep a diary of activity and pulse oxreadings so when I go back to CCF in the fall I'll have something to show them. Sometimesit's difficult to remember when and where and how when the doctor asks questions."This is why it is important to take a notebook with you to all doctor appointments -- you need to make notes and have a list of questions to ask the doc

This is also why it is important to have someone go with you to all doctor appointments -- they can make notes for you and/or listen with a different ear.

i hope this makes sense

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: 55 year old male Montreal idiopathic pulmonary fibrosisTo: Breathe-Support Date: Tuesday, June 16, 2009, 10:41 PM

Hello Montreal,So sorry for your new diagnosis. Your close to my age. I've been on the run since April 2009 when they discovered PF on my CXR. Many tests. TypicalSOB with increased activity. Some days worse than others, especially humid days.I'm not on O2 yet. It's so true about pacing yourself. I went on a hike with my daughterand granddaughters that included some light climbing. I'm happy to report that I was able to do it, but at a slower pace than the others. But that's my favorite place to be, out in nature.Anyway as soon as I get my oximeter I'm going to keep a diary of activity and pulse oxreadings so when I go back to CCF in the fall I'll have something to show them. Sometimesit's difficult to remember when and where and how when the doctor asks questions.I was into see my medical doctor and he does not think my PF was caused by aspirationor reflux, but said he would order the

gastric emptying time and HR esophageal manometry.So, I'm wondering should I do the tests or not? The doc at CCF wants me to. Newly diagnosed, I now realize I've had this for some time. The doctor said yesterday that I still havefine crackles sounds in my lung bases, but there is improvement. But this morning while I was lying on my left side' I could hear the crackles with each breathe I took. I realized then that I have heard that sound for at least two yearsand didn't realize what it was. Anyways try to stay positive! We're still here. I'll be hoping and praying everything works in your favor.All the best to you,,PJ 55 year old male Montreal idiopathic pulmonary fibrosisTo: Breathe-Support@ yahoogroups. comDate: Sunday, June 14, 2009, 8:17 PM

As I expected I was diagnosed with IPF last week. The first clues were x-rays last January during and 1 month following what was said to be flu / pneumonia. I vacationed in the tropics and SCUBA dove once in March. The xrays after this were "abnormal" and fibrosis was said by my family doctor.After I went thru: Pulmonlogist, ct-scan, exercise test, breathing test, pulmonlogist, cardiologist, pulmonlogist and a diagnosis of IPF.I have to do 8 minute walk test and a cardia echography exercise tesPulmonologist said no effective treatments exist, 5-10% possibility with antiinflamatory drugs with lots oof side effects. Need to get me on transplant list quickly and see if I should get oxygen. I`ve been suspecting I had breathing problems since 2006 with the stairs at work. Prior to that in 2000 at high altitude when climbing inclines and my problems with summer heat. I had restarted SCUBA diving then. Last summer

wasespecially worrying. I had discomfort in my chest. I feel better in buildings with airconditioning. Outside today or with windows open I feel a warmth in my chest.Prior to all this I was using antihistamines & decongestants in 2007, I stopped. I was prescribed Nasonex, this gave me a cough and hurt my chest. Later Rhinocort & lozec. The Rhinocort gave me a cough. I stopped taking it in April and my coughing subsided 90%. I cough sometimes when I eat and clear post nasal drip caught in my nasal passage or throat.

[Guest guest]

Hi PJ,I'd be more inclined to listen to the advice of the specialist than the GP. The 24 hour test is a pain but isn't risky to your health or at least it is an extremely small risk according to the guy who performed my test. Isn't it worth it to eliminate or substantially reduce anything that might contribute to the progress of the disease? I think it would be. I shouldn't be trying to convince you and I'm not just trying to give you some questions to consider.Best of luck in your decisions,Peggy E.

From: pikpobedy Subject: 55 year old male Montreal idiopathic pulmonary fibrosisTo: Breathe-Support@ yahoogroups. comDate: Sunday, June 14, 2009, 8:17 PM

As I expected I was diagnosed with IPF last week. The first clues were x-rays last January during and 1 month following what was said to be flu / pneumonia. I vacationed in the tropics and SCUBA dove once in March. The xrays after this were "abnormal" and fibrosis was said by my family doctor.After I went thru: Pulmonlogist, ct-scan, exercise test, breathing test, pulmonlogist, cardiologist, pulmonlogist and a diagnosis of IPF.I have to do 8 minute walk test and a cardia echography exercise tesPulmonologist said no effective treatments exist, 5-10% possibility with antiinflamatory drugs with lots oof side effects. Need to get me on transplant list quickly and see if I should get oxygen. I`ve been suspecting I had breathing problems since 2006 with the stairs at work. Prior to that in 2000 at high altitude when climbing inclines and my problems with summer heat. I had restarted SCUBA diving then. Last summer

wasespecially worrying. I had discomfort in my chest. I feel better in buildings with airconditioning. Outside today or with windows open I feel a warmth in my chest.Prior to all this I was using antihistamines & decongestants in 2007, I stopped. I was prescribed Nasonex, this gave me a cough and hurt my chest. Later Rhinocort & lozec. The Rhinocort gave me a cough. I stopped taking it in April and my coughing subsided 90%. I cough sometimes when I eat and clear post nasal drip caught in my nasal passage or throat.

[Guest guest]

Hi Joyce,

I'm on Cellcept, Prednisone, Acetylcistine (AKA NAC) also. Do you think all of this is helping your IPF? Also, where are you in Pennsylvania?

Adrienne

From: pikpobedy <pikpobedy (AT) yahoo (DOT) com>Subject: 55 year old male Montreal idiopathic pulmonary fibrosisTo: Breathe-Support@ yahoogroups. comDate: Sunday, June 14, 2009, 8:17 PM

As I expected I was diagnosed with IPF last week. The first clues were x-rays last January during and 1 month following what was said to be flu / pneumonia. I vacationed in the tropics and SCUBA dove once in March. The xrays after this were "abnormal" and fibrosis was said by my family doctor.After I went thru: Pulmonlogist, ct-scan, exercise test, breathing test, pulmonlogist, cardiologist, pulmonlogist and a diagnosis of IPF.I have to do 8 minute walk test and a cardia echography exercise tesPulmonologist said no effective treatments exist, 5-10% possibility with antiinflamatory drugs with lots oof side effects. Need to get me on transplant list quickly and see if I should get oxygen. I`ve been suspecting I had breathing problems since 2006 with the stairs at work. Prior to that in 2000 at high altitude when climbing inclines and my problems with summer heat. I had restarted SCUBA diving then. Last summer was

especially worrying. I had discomfort in my chest. I feel better in buildings with airconditioning. Outside today or with windows open I feel a warmth in my chest.Prior to all this I was using antihistamines & decongestants in 2007, I stopped. I was prescribed Nasonex, this gave me a cough and hurt my chest. Later Rhinocort & lozec. The Rhinocort gave me a cough. I stopped taking it in April and my coughing subsided 90%. I cough sometimes when I eat and clear post nasal drip caught in my nasal passage or throat.

[Guest guest]



what is gastric emptying test??

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

55 year old male Montreal idiopathic pulmonary fibrosisTo: Breathe-Support@ yahoogroups. comDate: Sunday, June 14, 2009, 8:17 PM

As I expected I was diagnosed with IPF last week. The first clues were x-rays last January during and 1 month following what was said to be flu / pneumonia. I vacationed in the tropics and SCUBA dove once in March. The xrays after this were "abnormal" and fibrosis was said by my family doctor.After I went thru: Pulmonlogist, ct-scan, exercise test, breathing test, pulmonlogist, cardiologist, pulmonlogist and a diagnosis of IPF.I have to do 8 minute walk test and a cardia echography exercise tesPulmonologist said no effective treatments exist, 5-10% possibility with antiinflamatory drugs with lots oof side effects. Need to get me on transplant list quickly and see if I should get oxygen. I`ve been suspecting I had breathing problems since 2006 with the stairs at work. Prior to that in 2000 at high altitude when climbing inclines and my problems with summer heat. I had restarted SCUBA diving then. Last summerwasespecially worrying. I had discomfort in my chest. I feel better in buildings with airconditioning. Outside today or with windows open I feel a warmth in my chest.Prior to all this I was using antihistamines & decongestants in 2007, I stopped. I was prescribed Nasonex, this gave me a cough and hurt my chest. Later Rhinocort & lozec. The Rhinocort gave me a cough. I stopped taking it in April and my coughing subsided 90%. I cough sometimes when I eat and clear post nasal drip caught in my nasal passage or throat.

[Guest guest]

I think it's anorther name for gastrointestinal motility study. PJ 55 year old male Montreal idiopathic pulmonary fibrosisTo: Breathe-Support@ yahoogroups. comDate: Sunday, June 14, 2009, 8:17 PM

As I expected I was diagnosed with IPF last week. The first clues were x-rays last January during and 1 month following what was said to be flu / pneumonia. I vacationed in the tropics and SCUBA dove once in March. The xrays after this were "abnormal" and fibrosis was said by my family doctor.After I went thru: Pulmonlogist, ct-scan, exercise test, breathing test, pulmonlogist, cardiologist, pulmonlogist and a diagnosis of IPF.I have to do 8 minute walk test and a cardia echography exercise tesPulmonologist said no effective treatments exist, 5-10% possibility with antiinflamatory drugs with lots oof side effects. Need to get me on transplant list quickly and see if I should get oxygen. I`ve been suspecting I had breathing problems since 2006 with the stairs at work. Prior to that in 2000 at high altitude when climbing inclines and my problems with summer heat. I had restarted SCUBA diving then. Last summerwasespecially worrying. I had discomfort in my chest. I feel better in buildings with airconditioning. Outside today or with windows open I feel a warmth in my chest.Prior to all this I was using antihistamines & decongestants in 2007, I stopped. I was prescribed Nasonex, this gave me a cough and hurt my chest. Later Rhinocort & lozec. The Rhinocort gave me a cough. I stopped taking it in April and my coughing subsided 90%. I cough sometimes when I eat and clear post nasal drip caught in my nasal passage or throat.