Guest guest Posted February 27, 2006 Report Share Posted February 27, 2006 Bill, Like you I was very active, an endurance athelete doing 100+ miles on my bicycle, races and training rides up and down huge mountains. In 2003 I found out I had cancer, don't have it anymore, its gone, but the treatments fried my lungs, chemo and radiation. Now I can't walk across the parking lot without losing my breath. Instead of being bitter about it, I decided to have a right type of attitude and did something about it. My new $5,000.00 custom bike from Italy that I got a few months ago is going on Ebay, and I am going to use that money to buy me a Harley son and go for a ride into the sunset! Sounds better than sitting on the couch... Steve by the way, I got a backpack and threw in the portable oxygen for the ride! > > I am a 69 year old Canuk from Cambridge, Ontario who was finally > diagnosed with Pulmonary Fibrosis in November, 2004 aafter a cat scan > pinpointed my problem. > Since around my retirement 2 months before I was 65 in 2001 I had had a > dry cough and running short of breath , and had had stress tests, > MRI's, blood vessel checks, heart value checks, which showed nothing. > I was a Millwright and was around paint spray, welding fumes, dust, etc. > My obsession was playing tennis and indoor badminton 6 days a week, > until Pulmonary Fibrosis caught up with me 1 1/2 years ago. > Now, I am on oxygen 24/7 and have difficulty breathing and moving to > the next room. > I have not taken any Prednisone or anything else. > Any coughing usually brings 10 second blackouts and shaking. > Bill Scarland > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Steve If you were an endurance athletic you were far ahead of me. Do you have Pulmonary Fibrosis? How old are you and where do you live? You mentioned the Harley which picked up my ears. One and a have years ago, I flew with a friend to do some low key kayaking out on Vancouver Island. When there I spotted this bike and motorcycle rental in downtown , and rented a Harley Sportster for a two hour cruise along the coast. I hadn't been on a motorcycle in 18 years, or I would have rented a Harley Road King. Now I haven't enough stamina to blow out a candle, and haven't been out the door in 3 months. Bill Scarland > Bill, > Like you I was very active, an endurance athelete doing 100+ miles > on my bicycle, races and training rides up and down huge mountains. > In 2003 I found out I had cancer, don't have it anymore, its gone, > but the treatments fried my lungs, chemo and radiation. Now I can't > walk across the parking lot without losing my breath. Instead of > being bitter about it, I decided to have a right type of attitude > and did something about it. My new $5,000.00 custom bike from Italy > that I got a few months ago is going on Ebay, and I am going to use > that money to buy me a Harley son and go for a ride into the > sunset! > Sounds better than sitting on the couch... > Steve > > by the way, I got a backpack and threw in the portable oxygen for > the ride! > > > > > > > > I am a 69 year old Canuk from Cambridge, Ontario who was finally > > diagnosed with Pulmonary Fibrosis in November, 2004 aafter a cat > scan > > pinpointed my problem. > > Since around my retirement 2 months before I was 65 in 2001 I had > had a > > dry cough and running short of breath , and had had stress tests, > > MRI's, blood vessel checks, heart value checks, which showed > nothing. > > I was a Millwright and was around paint spray, welding fumes, > dust, etc. > > My obsession was playing tennis and indoor badminton 6 days a > week, > > until Pulmonary Fibrosis caught up with me 1 1/2 years ago. > > Now, I am on oxygen 24/7 and have difficulty breathing and moving > to > > the next room. > > I have not taken any Prednisone or anything else. > > Any coughing usually brings 10 second blackouts and shaking. > > Bill Scarland > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Do you have problems with acid reflux? Carman -------------- Original message -------------- > I am a 69 year old Canuk from Cambridge, Ontario who was finally > diagnosed with Pulmonary Fibrosis in November, 2004 aafter a cat scan > pinpointed my problem. > Since around my retirement 2 months before I was 65 in 2001 I had had a > dry cough and running short of breath , and had had stress tests, > MRI’s, blood vessel checks, heart value checks, which showed nothing. > I was a Millwright and was around paint spray, welding fumes, dust, etc. > My obsession was playing tennis and indoor badminton 6 days a week, > until Pulmonary Fibrosis caught up with me 1 1/2 years ago. > Now, I am on oxygen 24/7 and have difficulty breathing and moving to > the next room. > I have not taken any Prednisone or anything else. > Any coughing usually brings 10 second blackouts and shaking. > Bill Scarland > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 , I take Prilosec. It seems that reflux goes hand in hand with lung disease. I have Bronchiectasis and PF...have to do postural drainage and physiotherapy. And lots of coughing. All of that causes reflux to worsen. The doc says that if stomach contents are refluxed, bacteria travels to the lungs....NOT a good thing. So, if the doc tells you to take meds for it...take it. Tomorrow Joyce>> Do you have problems with acid reflux?> Carman> -------------- Original message -------------- > From: dorothy scarland dscarland@... > > > I am a 69 year old Canuk from Cambridge, Ontario who was finally > > diagnosed with Pulmonary Fibrosis in November, 2004 aafter a cat scan > > pinpointed my problem. > > Since around my retirement 2 months before I was 65 in 2001 I had had a > > dry cough and running short of breath , and had had stress tests, > > MRI's, blood vessel checks, heart value checks, which showed nothing. > > I was a Millwright and was around paint spray, welding fumes, dust, etc. > > My obsession was playing tennis and indoor badminton 6 days a week, > > until Pulmonary Fibrosis caught up with me 1 1/2 years ago. > > Now, I am on oxygen 24/7 and have difficulty breathing and moving to > > the next room. > > I have not taken any Prednisone or anything else. > > Any coughing usually brings 10 second blackouts and shaking. > > Bill Scarland > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Yes I have PF, I am 51 and I live in Mesa AZ. Looking forward to riding for as long as I can, however long that is! Getting a Road King Custom, maybe new, maybe used, depends on what I can afford. If you are in the area, the rides on me, got some awesome places around here to check out! Steve dorothy scarland wrote: SteveIf you were an endurance athletic you were far ahead of me.Do you have Pulmonary Fibrosis? How old are you and where do you live?You mentioned the Harley which picked up my ears.One and a have years ago, I flew with a friend to do some low key kayaking out on Vancouver Island. When there I spotted this bike and motorcycle rental in downtown , and rented a Harley Sportster for a two hour cruise along the coast. I hadn't been on a motorcycle in 18 years, or I would have rented a Harley Road King.Now I haven't enough stamina to blow out a candle, and haven't been out the door in 3 months.Bill Scarland> Bill,> Like you I was very active, an endurance athelete doing 100+ miles> on my bicycle, races and training rides up and down huge mountains.> In 2003 I found out I had cancer, don't have it anymore, its gone,> but the treatments fried my lungs, chemo and radiation. Now I can't> walk across the parking lot without losing my breath. Instead of> being bitter about it, I decided to have a right type of attitude> and did something about it. My new $5,000.00 custom bike from Italy> that I got a few months ago is going on Ebay, and I am going to use> that money to buy me a Harley son and go for a ride into the> sunset!> Sounds better than sitting on the couch...> Steve>> by the way, I got a backpack and threw in the portable oxygen for> the ride!>>>> > >> > I am a 69 year old Canuk from Cambridge, Ontario who was finally> > diagnosed with Pulmonary Fibrosis in November, 2004 aafter a cat> scan> > pinpointed my problem.> > Since around my retirement 2 months before I was 65 in 2001 I had> had a> > dry cough and running short of breath , and had had stress tests,> > MRI's, blood vessel checks, heart value checks, which showed> nothing.> > I was a Millwright and was around paint spray, welding fumes,> dust, etc.> > My obsession was playing tennis and indoor badminton 6 days a> week,> > until Pulmonary Fibrosis caught up with me 1 1/2 years ago.> > Now, I am on oxygen 24/7 and have difficulty breathing and moving> to> > the next room.> > I have not taken any Prednisone or anything else.> > Any coughing usually brings 10 second blackouts and shaking.> > Bill Scarland> >>>>>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 Boy I do. Not sure what is causing it. I have stopped taking some pills to see if they are the problem but so far nothing helped. What are people taking for this problem? Dave Re: Pulmonary Fibrosis Do you have problems with acid reflux? Carman -------------- Original message -------------- > I am a 69 year old Canuk from Cambridge, Ontario who was finally > diagnosed with Pulmonary Fibrosis in November, 2004 aafter a cat scan > pinpointed my problem. > Since around my retirement 2 months before I was 65 in 2001 I had had a > dry cough and running short of breath , and had had stress tests, > MRI’s, blood vessel checks, heart value checks, which showed nothing. > I was a Millwright and was around paint spray, welding fumes, dust, etc. > My obsession was playing tennis and indoor badminton 6 days a week, > until Pulmonary Fibrosis caught up with me 1 1/2 years ago. > Now, I am on oxygen 24/7 and have difficulty breathing and moving to > the next room. > I have not taken any Prednisone or anything else. > Any coughing usually brings 10 second blackouts and shaking. > Bill Scarland > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 Yeah - as far as I can tell reflux is associated with IPF. This crank's theory is that the irriation sort of teaches the system to get on a course that leads to the auto-immune factor. My doc gave me meds for it and they work. 40mg Protonix once a day. My wife suffers the same thing and her's are something else twice a day - which she says work just fine. Used to get severe pain, occasionally, as I tried to swallow. My guess is that there was some knid of irritation just about at the meeting of the esophagus (or whatever the hell it is,) and the stomach. The food didn't want to go down and just sat there to my regret. Occasionally I'd vomit it up. Ofcourse some food eventually did get down, otherwise I'd be on the wrong side of the grass right now. But at night I'd get reflux that welled up from my belly, got to my throat, and got inhaled into my lungs. I'd kick my wife awake, not cause she could do anything but because when you're dieing it seems like the right thing to do. And then I'd gasp, which didn't work, and then when the gasping got me a little edge on the problem, I'd try to blast the crap out. Which did work. Or you'd be getting this message 'from the other side.' Get the meds. If you ever do suffer such a thing tell your doc. s/he may have seen such a thing in action before and, well, it's not something you forget seeing. Or experiencing. Best wishes, Owen > > Boy I do. Not sure what is causing it. I have stopped taking some pills to see if they are the problem but so far nothing helped. What are people taking for this problem? > Dave > > Re: Pulmonary Fibrosis > > > Do you have problems with acid reflux? > Carman > -------------- Original message -------------- > > > > > I am a 69 year old Canuk from Cambridge, Ontario who was finally > > diagnosed with Pulmonary Fibrosis in November, 2004 aafter a cat scan > > pinpointed my problem. > > Since around my retirement 2 months before I was 65 in 2001 I had had a > > dry cough and running short of breath , and had had stress tests, > > MRI's, blood vessel checks, heart value checks, which showed nothing. > > I was a Millwright and was around paint spray, welding fumes, dust, etc. > > My obsession was playing tennis and indoor badminton 6 days a week, > > until Pulmonary Fibrosis caught up with me 1 1/2 years ago. > > Now, I am on oxygen 24/7 and have difficulty breathing and moving to > > the next room. > > I have not taken any Prednisone or anything else. > > Any coughing usually brings 10 second blackouts and shaking. > > Bill Scarland > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 It's so weird to read these emails and realize we are ALL experiencing the same exact things! Any of these could be written by me about MY husband! He has the reflux with the same exact symptoms at times--not frequently thank goodness! But he awakes from sleep and instantly sits up and gasps a while before he throws up whatever is on his stomach. The doctor told him it was acid reflux and he takes something 2 times a day before breakfast and supper and it really does help! It's very scarey when he has one of those " throw up " episodes though! Judy > >Reply-To: Breathe-Support >To: Breathe-Support >Subject: Re: Pulmonary Fibrosis >Date: Wed, 01 Mar 2006 14:03:42 -0000 > >Yeah - as far as I can tell reflux is associated with IPF. This >crank's theory is that the irriation sort of teaches the system to >get on a course that leads to the auto-immune factor. >My doc gave me meds for it and they work. 40mg Protonix once a >day. My wife suffers the same thing and her's are something else >twice a day - which she says work just fine. >Used to get severe pain, occasionally, as I tried to swallow. My >guess is that there was some knid of irritation just about at the >meeting of the esophagus (or whatever the hell it is,) and the >stomach. The food didn't want to go down and just sat there to my >regret. Occasionally I'd vomit it up. Ofcourse some food >eventually did get down, otherwise I'd be on the wrong side of the >grass right now. >But at night I'd get reflux that welled up from my belly, got to my >throat, and got inhaled into my lungs. I'd kick my wife awake, not >cause she could do anything but because when you're dieing it seems >like the right thing to do. And then I'd gasp, which didn't work, >and then when the gasping got me a little edge on the problem, I'd >try to blast the crap out. Which did work. Or you'd be getting >this message 'from the other side.' > Get the meds. > If you ever do suffer such a thing tell your doc. s/he may have >seen such a thing in action before and, well, it's not something you >forget seeing. Or experiencing. > Best wishes, Owen > > > > > > > Boy I do. Not sure what is causing it. I have stopped taking some >pills to see if they are the problem but so far nothing helped. What >are people taking for this problem? > > Dave > > > > Re: Pulmonary Fibrosis > > > > > > Do you have problems with acid reflux? > > Carman > > -------------- Original message -------------- > > > > > > > > I am a 69 year old Canuk from Cambridge, Ontario who was >finally > > > diagnosed with Pulmonary Fibrosis in November, 2004 aafter a >cat scan > > > pinpointed my problem. > > > Since around my retirement 2 months before I was 65 in 2001 >I had had a > > > dry cough and running short of breath , and had had stress >tests, > > > MRI's, blood vessel checks, heart value checks, which showed >nothing. > > > I was a Millwright and was around paint spray, welding >fumes, dust, etc. > > > My obsession was playing tennis and indoor badminton 6 days >a week, > > > until Pulmonary Fibrosis caught up with me 1 1/2 years ago. > > > Now, I am on oxygen 24/7 and have difficulty breathing and >moving to > > > the next room. > > > I have not taken any Prednisone or anything else. > > > Any coughing usually brings 10 second blackouts and shaking. > > > Bill Scarland > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 Hi Dave, Bruce had a fundiplication (I know I butchered that) in 2002 shortly before his diagnosis. This operation wraps you stomach around your esophagus to tighten the spincter muscle. However, it did not completely stop the acid reflux (his probable cause of PF). So he takes prevacid and Ranitidine. Carman --------- Re: Pulmonary Fibrosis Do you have problems with acid reflux? Carman -------------- Original message -------------- > I am a 69 year old Canuk from Cambridge, Ontario who was finally > diagnosed with Pulmonary Fibrosis in November, 2004 aafter a cat scan > pinpointed my problem. > Since around my retirement 2 months before I was 65 in 2001 I had had a > dry cough and running short of breath , and had had stress tests, > MRI’s, blood vessel checks, heart value checks, which showed nothing. > I was a Millwright and was around paint spray, welding fumes, dust, etc. > My obsession was playing tennis and indoor badminton 6 days a week, > until Pulmonary Fibrosis caught up with me 1 1/2 years ago. > Now, I am on oxygen 24/7 and have difficulty breathing and moving to > the next room. > I have not taken any Prednisone or anything else. > Any coughing usually brings 10 second blackouts and shaking. > Bill Scarland > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Bill, Are saying that you choose not to take medication? Or that the pulmonologist has not prescribed any medication? I use nebulizer treatments, physiotherapy and mucous thinning medicines to keep my lungs clear...among other things. If you are coughing that hard, you need help. Are you bringing up mucous when you cough? The docs tell me that I am in end stage. I work hard to keep my lungs cleared out. Then I can breathe in...when they are full ..... no breathing! Hugs, Joyce>> This is the 69 year old Canuk again, I wrote last week for the first > time, and am writing to-day to find out from anybody who is as far gone > as I am. I am on oxygen 24 hours a day, can only walk 25 feet without > gasping. If I am sitting, and start coughing, I will convulse for 20 > seconds or so, and not know what went on. I have not been out of the > house for 3 months.> I have never taken Prednisone or any other drug.> Please write.> Bill Scarland> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Bill - when you say you convulse for 20 seconds are you saying that you pass out? Does your doctor know this? How much oxygen are you on? Lots of us are on oxygen all the time....and I can walk only a little further than you without being really winded.....do you have family or friends? Get someone to take you out in a wheelchair....I hate to think of you being stuck in your house for so long. We are all here to help each other, so keep writing. --Diane Quinlan dianequinlan@... -------------- Original message -------------- This is the 69 year old Canuk again, I wrote last week for the first time, and am writing to-day to find out from anybody who is as far gone as I am. I am on oxygen 24 hours a day, can only walk 25 feet without gasping. If I am sitting, and start coughing, I will convulse for 20 seconds or so, and not know what went on. I have not been out of the house for 3 months.I have never taken Prednisone or any other drug.Please write.Bill Scarland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Bill, Sounds as though your pretty well developed with IPF. I'm not at your point as yet but it's in my future, so I'm told. From what I've heard about Prednisone, I'll refuse it if anyone prescribes it. I haven't heard anyone say that it helped them, but have heard posts from lots of people that say it really screwed them up, and is hard to get off of. Lots of luck,......Arlen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 Diane: I am new to this fibrosis and have yet to be on oxygen. do you have to sleep with a CPAP? what are some of the things I can do to slow progression? loisjoiner_2006@... dianequinlan@... wrote: Bill - when you say you convulse for 20 seconds are you saying that you pass out? Does your doctor know this? How much oxygen are you on? Lots of us are on oxygen all the time....and I can walk only a little further than you without being really winded.....do you have family or friends? Get someone to take you out in a wheelchair....I hate to think of you being stuck in your house for so long. We are all here to help each other, so keep writing. --Diane Quinlan dianequinlan@... -------------- Original message -------------- This is the 69 year old Canuk again, I wrote last week for the first time, and am writing to-day to find out from anybody who is as far gone as I am. I am on oxygen 24 hours a day, can only walk 25 feet without gasping. If I am sitting, and start coughing, I will convulse for 20 seconds or so, and not know what went on. I have not been out of the house for 3 months.I have never taken Prednisone or any other drug.Please write.Bill Scarland Yahoo! Mail Bring photos to life! New PhotoMail makes sharing a breeze. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 I don't have PF like a lot of people in this group. I have very small lungs because of a curvature of the spine. To answer your question, tho...you don't need to be on oxygen to use CPAP. People who have sleep apnea can just be on CPAP with no oxygen. I don't need CPAP, but am on oxygen all the time. Others will tell you if you can slow the progression of your disease.... --Diane Quinlan dianequinlan@... -------------- Original message -------------- Diane: I am new to this fibrosis and have yet to be on oxygen. do you have to sleep with a CPAP? what are some of the things I can do to slow progression? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 Please excuse my humble ignorance. What is CPAP? Arlen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 I Know what it is. It is that people with PF say in the morning except with a R in the the middle insteed of a P. As in Oh _ _ _ _ another day of dragging this hose around. Ha Ha Then you do need to look at the good side I did waik up!!!! sarleno@... wrote: Please excuse my humble ignorance. What is CPAP? Arlen Relax. Yahoo! Mail virus scanning helps detect nasty viruses! Quote Link to comment Share on other sites More sharing options...
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