Re: 55 year old male Montreal idiopathic pulmonary fibrosis

[Guest guest]

Joyce

I am not taking any medicine at present.

Just getting the tests to get onto the transplant list.

I`m seeing a pulmonolist attached to the Montreal Jewish General Hosp.

I`m getting second opinions at McGill U`s Montreal Chest Institute with a

pulmonologist attached to St `s Hosp.

I have no oximeter.

I am scheduled for a six minute walk test in three days. I think this will

determine if I need O2 assistance.

I have discomfort in my chest depending on what the air is like. It is easy to

forget if I don`t think about it.

Pik

>

>

> From: pikpobedy <pikpobedy (AT) yahoo (DOT) com>

> Subject: 55 year old male Montreal idiopathic pulmonary

fibrosis

> To: Breathe-Support@ yahoogroups. com

> 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 tes

> Pulmonologist 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]

yes it is all helping my disease

last year they wanted me on the transplant list, i was listed for a couple of months and now i am on the inactive list

Langhorne PA, past Neshaminy Mall, near Oxford Valley Mall and Sesame Place

Last November, three of us met at a restaurant near Neshaminy Mall

i was thinking that maybe we could all meet at County Club Diner on Cottman Avenue near Northeast High School

it's sort of in the middle

if you, patti, and linda agree, we just need to set a date and time

of course if some of the other Pennsylvania folk would like to join us, maybe we can meet at King of Prussia

what do you all think?

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: Wednesday, June 17, 2009, 5:55 PM

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]

Well Peggy I'm having the gastric emptying test Monday and need to schedule esophageal manometryat CCF since I haven't found a place that does it locally.It just seems bizarre that my stomach and swallowing is giving me so much trouble now.I used to love to eat and now it seems like should I or shouldn't I because I either have trouble swallowing or my stomach feels lousy afterward. I'm already on Nexium. I have beenfor about 2 years. I just had an endoscopy and colonoscopy and everything was fine includingthe duodenal biopsy. So I'll see what this turns up.I really don't want another pill, but if I need to take Reglan I will.Thanks for your input.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.

[Guest guest]

Hi PJ,Hopefully the people at your testing location will give you the information you need. Are you eating more smaller meals? I think our stomachs don't work as efficiently as we get older (you know it ain't for the feint of heart don't you - this getting older thing) and the various drugs and what not are harder to digest and can cause their own problems. I did great the day they had the tube in me - hardly ate so no problems LOL. I do fine if I don't over eat but it is so easy to eat more than I should and I do suffer when I do that. My belching has become as bad as young men are stereotyped being. It's downright embarrassing but my husband just laughs and so do I. You can let us all know your experience with the test - I'm curious to compare notes. Good luck and don't plan on doing much.

That way if you do better than I did you'll have 'free time'.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

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]

Mama Sher,

I can answer that one. About 6 months ago they had me eat radioactive egg salad and watched it move through my system while I lay on a table for an hour. Unfortunately the egg salad did not go anywhere. It just hung around in my stomach wondering where the rest of the meal was. That's when they diagnosed me AGAIN with Gastro Parisis. It isn't a painful test just a very boring one.

Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho

From: Sher Bauman

Sent: Thursday, June 18, 2009 1:52 PM

To: Breathe-Support

Subject: Re: 55 year old male Montreal idiopathic pulmonary fibrosis

 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]



Sunny....in 1978 I swallowed radioactive iodine to wipe out a thyroid goiter...

I can't help but wonder what other damage was done to my body......

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]

Well Peggy E. I do eat five small meals a day. I have for about five yearswhen I made up mind to lose some extra baggage I was carrying around.I also burp alot. Since I'm on Nexium I don't experience heartburn unless Ieat something really spicy or greasy. I'll let you know how the esophageal manometry goes.Take care,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. Lastsummerwasespecially 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 orthroat.