Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Hi Steve, I'm still slogging through yesterdays emails because I was busy all day. Today is terrible day as a storm is moving through and Don's coughing is awful. My hubby has much your same story. His first symptom was a cough and has plagued him all the way through. He is on O2 and it is increasing frequently. he is on immuran and pred 20%. We were told at Mayo that 3% can be helped by it I've read elsewhere 1%. I'll take anything. There is a good book at http://books.google.com/ called Never Tell Them You're Dying. It is out of print and you can't buy it but you can read it online. It was written by Barry and his wife Kerry. (cool eh?) I'd love to talk to them. He swears a lot but he is so Don. (Remember Don is a farmer- swearing is his second nature) Barry was diagnosed 5 years ago with pf and I have laughed so hard and cried and have learned a lot. A good book for a guy. They moved to Oregon because of his breathing so have any of you from Oregon ever heard of him? I can't find him anywhere. I'm almost finished with the book. I laughed at his discription of blood gas. I'm sure some wouldn't find it funny and Don says he doesn't even want to read it because if you are in it - it isn't funny. K central Il hubby pf 2006Sher Bauman wrote: Steve... The weather here in the PNW has been different alright. We have forecast for huge storm coming in Friday.... Seattle is about a 3 hr drive for us I think. We might go there or if something pans out to be here in Portland for a get-together we will certainly plan on meeting you at the train station. OR: If we all end up going to CA we will meet you at the train as well. You can see by the posts I've asked about the area and will check out motel/hotels close by. We can't afford $120/higher (plus other expenses) a night so we scout around more. CA is just over the top aren't they. I like your posts too Steve. Funny you would think my energy level is high....not. I just have an outgoing personality. BTW, are you married? Would wife be coming too? Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there! Re: Re: Another Newbie with a question >for> > the> > > >group...> > > >Date: Wed, 19 Mar 2008 10:37:32 -0700> > > >> > > >Hello Steve from WA....is this your first post? If so tell us about> > > >you...diagnosis, age, married, kids?> > > >I live about 25 miles South of Portland OR. There are only a few of> > us here> > > >in our beautiful PNW.> > > >Post again so we can get to know you....when you sign your name, >add:> > > >diagnosis and date of and state.> > > >Take care.> > > > Mama-Sher, age 69. IPF 3-06, OR.> > > > Don't fret about tomorrow, God is already there!> > > >> > > >> > >> >> >> >> >>>>> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2008 Report Share Posted March 29, 2008 , Thanks for the link to this book I read it over the last couple of days and would recommend it to anyone who was diagnosed with this disease. The parallels with my own experiences were uncanny (with the exception of the prednisone cause I would not take it). I would certainly recommend it for those contemplating a biopsy. If it had not been required to enter the pirfenidone study I would have never had the biopsy. If I had it to do all over again I would not have it done. We had over 5 inches of snow yesterday here in NH and the book was good company. Thanks again for recommending it. Ken Baker UIP/IPF 12/05 approaching week 60 in pirfenidone clinical trial and holding my own (using O2 only when exercising) From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Kennelly Sent: Thursday, March 27, 2008 2:16 PM To: Breathe-Support Subject: Re: Re: Steve and all Hi Steve, I'm still slogging through yesterdays emails because I was busy all day. Today is terrible day as a storm is moving through and Don's coughing is awful. My hubby has much your same story. His first symptom was a cough and has plagued him all the way through. He is on O2 and it is increasing frequently. he is on immuran and pred 20%. We were told at Mayo that 3% can be helped by it I've read elsewhere 1%. I'll take anything. There is a good book at http://books.google.com/ called Never Tell Them You're Dying. It is out of print and you can't buy it but you can read it online. It was written by Barry and his wife Kerry. (cool eh?) I'd love to talk to them. He swears a lot but he is so Don. (Remember Don is a farmer- swearing is his second nature) Barry was diagnosed 5 years ago with pf and I have laughed so hard and cried and have learned a lot. A good book for a guy. They moved to Oregon because of his breathing so have any of you from Oregon ever heard of him? I can't find him anywhere. I'm almost finished with the book. I laughed at his discription of blood gas. I'm sure some wouldn't find it funny and Don says he doesn't even want to read it because if you are in it - it isn't funny. K central Il hubby pf 2006 Sher Bauman <bofuswbcable (DOT) net> wrote: Steve... The weather here in the PNW has been different alright. We have forecast for huge storm coming in Friday.... Seattle is about a 3 hr drive for us I think. We might go there or if something pans out to be here in Portland for a get-together we will certainly plan on meeting you at the train station. OR: If we all end up going to CA we will meet you at the train as well. You can see by the posts I've asked about the area and will check out motel/hotels close by. We can't afford $120/higher (plus other expenses) a night so we scout around more. CA is just over the top aren't they. I like your posts too Steve. Funny you would think my energy level is high....not. I just have an outgoing personality. BTW, are you married? Would wife be coming too? Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there! Re: Re: Another Newbie with a question >for > > the > > > >group... > > > >Date: Wed, 19 Mar 2008 10:37:32 -0700 > > > > > > > >Hello Steve from WA....is this your first post? If so tell us about > > > >you...diagnosis, age, married, kids? > > > >I live about 25 miles South of Portland OR. There are only a few of > > us here > > > >in our beautiful PNW. > > > >Post again so we can get to know you....when you sign your name, >add: > > > >diagnosis and date of and state. > > > >Take care. > > > > Mama-Sher, age 69. IPF 3-06, OR. > > > > Don't fret about tomorrow, God is already there! > > > > > > > > > > > > > > > > > > > > > > > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2008 Report Share Posted March 30, 2008 According to the UofW 20% of patients respond to the immuran, prednisone, NAC treatment. Yes Stable is my new favorite word. Steve59 from WA IPF 2006 > >Reply-To: Breathe-Support >To: Breathe-Support >Subject: Re: Steve and all >Date: Sun, 30 Mar 2008 23:14:54 -0000 > > >Dear Ken, > > Good to get your feedback...I'm even more motivated to >go to the trouble of doing some 'online reading'! > > I share your feelings about VATS...I only had my done >to leave open the OPTION to join a study & I was lax in looking into the >latest advice on how it should be performed, by whom & the number of >samples required for a definitive diagnosis. I settled for the ease of a >'local' job rather than going to the trouble & expense of going to a >city hospital where there were surgeons more experienced in PF. > > While I still may have had it done, it certainly >would NOT be with the same surgeon but one who HAD done kept up with the >latest research & the need for 3 samples rather than relying on just >one! > > I'm left not eligible for the Trial due to the >lack of clarity of the results & now I've got the Pulmos hammering me to >accept the Prednisone /Immuran Path in case it might help! > > I've got an oximeter & I'm staying well clear of >them until my Sats start doing alarming things & I think I need O2..... > > STABLE is FABBY FANTASTIC > > in Oz > > > > > > > > > > > > > > > > > > > Hello Mama Sher and Group. I am 59 years old turning 60 on May >4. I > > > > haved > > > > > been married for 25 years on June 2 to Vickie. She suprised me >with > > >a > > > > 7 day > > > > > cruise to Alaska leaving May 7. We were not lucky enough to have >had > > > > > children even spending a lot of money on science to help. I was > > > > diagnosed > > > > > with IPF in 2006. I was a type A personality and listened to a > > >doctor > > > > for > > > > > years tell me I was getting older and fatigue was natural. We >had > > > > become > > > > > friends and sometime he quit listening. I was referred to a ear >nose > > > > > specialst because of stubborn ear infection and balance >problems. > > >The > > > > > chronic infections spread to a bone in the ear. One look at me >and > > > > listening > > > > > to my chest she referred me to a Pulmonologist and I changed my > > > > primary > > > > > doctor to an internal medicine doctor. She is Indian and sharp >as a > > > > tack. > > > > > Anyway after 6 months of being treated for adult onset asthma I >was > > > > > diagnosed with IPF. During this same period my new doctor also >found > > > > > Hemochromotosis, Osteoporosis, stage 1 Cirhosis caused by >untreated > > > > high > > > > > iron levels. My iron levels are close to normal now. IPF >treatment > > >was > > > > > prednisone 10mg, Imron, and NAC. For the last 9 months I see >doctors > > > > at the > > > > > U of W including Dr. Ganesh Raghu(world expert in IPF). I was >taken > > > > off > > > > > Imron about 4 months ago but next Thursday I will see Liver > > > > specialtists and > > > > > get the ok to go back on. The UofW seems to be the only place I >can > > > > get a > > > > > surgery done. On February 5th I had my gall bladder removed ( it >was > > > > > dessicated with old stones) and had a lung biopsy at the same >time. > > > > Four day > > > > > Hospital stay. Still not totally recouped. The lung biopsy was > > > > required for > > > > > upcoming trials and/or transplant. I still need to lose 30 to 40 > > > > pounds to > > > > > qualify. Think many of us are in that boat from what I read. My > > > > > pulmonologists only give me my 6 minute oximeter readings about > > >every > > > > 3 > > > > > months. Yesterday I was 91 so still avoiding o2. I have resisted > > > > counseling > > > > > (macho madness) but having read this group for a short while I >have > > > > decided > > > > > to call for appointment tomorrow. Anything that helps. Bear with >me > > > > your > > > > > group is a little confusing at first and Microsoft reached into >my > > > > computer > > > > > and changed my mail to MSN Hotmail losing half my favorites and >half > > > > my old > > > > > mail folders. I have already replied to 3 or 4 of you and will > > > > continue. > > > > > especially Mama-Sher,the other Steve,and plus all others in > > >this > > > > group. > > > > > > > > > > > > > > > > > > > > >From: " Sher Bauman " bofus@ > > > > > >Reply-To: Breathe-Support@ ><mailto:Breathe-Support%40yahoogroups.com> > > yahoogroups.com > > > > > >To: Breathe-Support@ <mailto:Breathe-Support%40yahoogroups.com> > > yahoogroups.com > > > > > >Subject: Re: Re: Another Newbie with a >question > > >for > > > > the > > > > > >group... > > > > > >Date: Wed, 19 Mar 2008 10:37:32 -0700 > > > > > > > > > > > >Hello Steve from WA....is this your first post? If so tell us >about > > > > > >you...diagnosis, age, married, kids? > > > > > >I live about 25 miles South of Portland OR. There are only a >few of > > > > us here > > > > > >in our beautiful PNW. > > > > > >Post again so we can get to know you....when you sign your >name, > > >add: > > > > > >diagnosis and date of and state. > > > > > >Take care. > > > > > > Mama-Sher, age 69. IPF 3-06, OR. > > > > > > Don't fret about tomorrow, God is already there! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > _____ > > > > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try > > ><http://us.rd.yahoo.com/evt=51733/*http:/mobile.yahoo.com/;_ylt=Ahu06i62\ >sR8H > > DtDypao8Wcj9tAcJ%20> it now. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2008 Report Share Posted March 30, 2008 According to the UofW 20% of patients respond to the immuran, prednisone, NAC treatment. Yes Stable is my new favorite word. Steve59 from WA IPF 2006 > >Reply-To: Breathe-Support >To: Breathe-Support >Subject: Re: Steve and all >Date: Sun, 30 Mar 2008 23:14:54 -0000 > > >Dear Ken, > > Good to get your feedback...I'm even more motivated to >go to the trouble of doing some 'online reading'! > > I share your feelings about VATS...I only had my done >to leave open the OPTION to join a study & I was lax in looking into the >latest advice on how it should be performed, by whom & the number of >samples required for a definitive diagnosis. I settled for the ease of a >'local' job rather than going to the trouble & expense of going to a >city hospital where there were surgeons more experienced in PF. > > While I still may have had it done, it certainly >would NOT be with the same surgeon but one who HAD done kept up with the >latest research & the need for 3 samples rather than relying on just >one! > > I'm left not eligible for the Trial due to the >lack of clarity of the results & now I've got the Pulmos hammering me to >accept the Prednisone /Immuran Path in case it might help! > > I've got an oximeter & I'm staying well clear of >them until my Sats start doing alarming things & I think I need O2..... > > STABLE is FABBY FANTASTIC > > in Oz > > > > > > > > > > > > > > > > > > > Hello Mama Sher and Group. I am 59 years old turning 60 on May >4. I > > > > haved > > > > > been married for 25 years on June 2 to Vickie. She suprised me >with > > >a > > > > 7 day > > > > > cruise to Alaska leaving May 7. We were not lucky enough to have >had > > > > > children even spending a lot of money on science to help. I was > > > > diagnosed > > > > > with IPF in 2006. I was a type A personality and listened to a > > >doctor > > > > for > > > > > years tell me I was getting older and fatigue was natural. We >had > > > > become > > > > > friends and sometime he quit listening. I was referred to a ear >nose > > > > > specialst because of stubborn ear infection and balance >problems. > > >The > > > > > chronic infections spread to a bone in the ear. One look at me >and > > > > listening > > > > > to my chest she referred me to a Pulmonologist and I changed my > > > > primary > > > > > doctor to an internal medicine doctor. She is Indian and sharp >as a > > > > tack. > > > > > Anyway after 6 months of being treated for adult onset asthma I >was > > > > > diagnosed with IPF. During this same period my new doctor also >found > > > > > Hemochromotosis, Osteoporosis, stage 1 Cirhosis caused by >untreated > > > > high > > > > > iron levels. My iron levels are close to normal now. IPF >treatment > > >was > > > > > prednisone 10mg, Imron, and NAC. For the last 9 months I see >doctors > > > > at the > > > > > U of W including Dr. Ganesh Raghu(world expert in IPF). I was >taken > > > > off > > > > > Imron about 4 months ago but next Thursday I will see Liver > > > > specialtists and > > > > > get the ok to go back on. The UofW seems to be the only place I >can > > > > get a > > > > > surgery done. On February 5th I had my gall bladder removed ( it >was > > > > > dessicated with old stones) and had a lung biopsy at the same >time. > > > > Four day > > > > > Hospital stay. Still not totally recouped. The lung biopsy was > > > > required for > > > > > upcoming trials and/or transplant. I still need to lose 30 to 40 > > > > pounds to > > > > > qualify. Think many of us are in that boat from what I read. My > > > > > pulmonologists only give me my 6 minute oximeter readings about > > >every > > > > 3 > > > > > months. Yesterday I was 91 so still avoiding o2. I have resisted > > > > counseling > > > > > (macho madness) but having read this group for a short while I >have > > > > decided > > > > > to call for appointment tomorrow. Anything that helps. Bear with >me > > > > your > > > > > group is a little confusing at first and Microsoft reached into >my > > > > computer > > > > > and changed my mail to MSN Hotmail losing half my favorites and >half > > > > my old > > > > > mail folders. I have already replied to 3 or 4 of you and will > > > > continue. > > > > > especially Mama-Sher,the other Steve,and plus all others in > > >this > > > > group. > > > > > > > > > > > > > > > > > > > > >From: " Sher Bauman " bofus@ > > > > > >Reply-To: Breathe-Support@ ><mailto:Breathe-Support%40yahoogroups.com> > > yahoogroups.com > > > > > >To: Breathe-Support@ <mailto:Breathe-Support%40yahoogroups.com> > > yahoogroups.com > > > > > >Subject: Re: Re: Another Newbie with a >question > > >for > > > > the > > > > > >group... > > > > > >Date: Wed, 19 Mar 2008 10:37:32 -0700 > > > > > > > > > > > >Hello Steve from WA....is this your first post? If so tell us >about > > > > > >you...diagnosis, age, married, kids? > > > > > >I live about 25 miles South of Portland OR. There are only a >few of > > > > us here > > > > > >in our beautiful PNW. > > > > > >Post again so we can get to know you....when you sign your >name, > > >add: > > > > > >diagnosis and date of and state. > > > > > >Take care. > > > > > > Mama-Sher, age 69. IPF 3-06, OR. > > > > > > Don't fret about tomorrow, God is already there! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > _____ > > > > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try > > ><http://us.rd.yahoo.com/evt=51733/*http:/mobile.yahoo.com/;_ylt=Ahu06i62\ >sR8H > > DtDypao8Wcj9tAcJ%20> it now. > > > > Quote Link to comment Share on other sites More sharing options...
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