Guest guest Posted April 1, 2001 Report Share Posted April 1, 2001 Hi Moe! Welcome! Great picture, thanks for uploading it. It's always nice to be able to put a face with a name. Congrats on the weight loss so far! Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2001 Report Share Posted April 1, 2001 Moe, Welcome to the list! Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2003 Report Share Posted June 8, 2003 Hi all, I am a new member and not diagnosed definitely. I have had walking and balance problems for 3 and a half years. I live in Longview, Tex. Had been going to one of the very best and renown neuros in Houston at Baylor College of Medicine for two years. He diagnosed Stiffman Syndrome because of lordosis, startle effect (Poured a cup of coffee down the phone when phone rang laying on the bar, that one took a while to ring again). Was neg on both Gad tests sent to Mayo and had normal EMG. I am on a support group for SMS and do not have the spasms they have. I am on a walker full time for the past year, three years ago I had three antique spots in Jefferson and Longview. I have a new neuro here in Longview and she checked my records and gave me a piece of paper with Primary Lateral Sclerosis on it and told me to tell her why I don't have it. My speech is terrible, have bouts of inhaling air all at once, only pain is in hamstring. no balance, started in left leg and has progressed to right. My blood pressure in higher lying than standing, but the neuro knows this. Started off on diazapam, stopped and put me on zanaflex, stopped and tried atavin, added baclofen 60 mgs (but I only did 30 per day because I wasn't walking as well) then added sinement (which seemed to help) with diazapam instead of atavin. My last trip to Houston he said none of the meds helped and the next thing was ivig. I told him no. Am now on 15 mgs. of diazapam and 60 mgs of baclofen, 1200 of COq10, 1200 mgs of E. Am not excersing at this time. I did for 45 minutes a day until I fell headfirst into the side of the bathtub and fractured my cheekbone. Waited two weeks and got up and put the exercise tape on turned loose of the walker to raise my arms up for the breathing and fell straight back and hit a table and had a knot the size of a baseball. Put ice on it stayed awake and didn't get sick. Figured it was all in a day's work around here. So many of this fits SMS and also MSA. Can any one add anything to this confusing mess? My husband is my caregiver. (he does well but thnks making the bed is straighting the bedspread and finding the sheet is a challenge). Hope this gets through as I am new to the computer as I feel sure Yahoo could confirm that. Smiles to you, Arlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 > > Hi all, > > I am a new member and not diagnosed definitely. I have had walking and balance problems for 3 and a half years. I live in Longview, Tex. Had been going to one of the very best and renown neuros in Houston at Baylor College of Medicine for two years. He diagnosed Stiffman Syndrome because of lordosis, startle effect (Poured a cup of coffee down the phone when phone rang laying on the bar, that one took a while to ring again). Was neg on both Gad tests sent to Mayo and had normal EMG. I am on a support group for SMS and do not have the spasms they have. I am on a walker full time for the past year, three years ago I had three antique spots in Jefferson and Longview. > > I have a new neuro here in Longview and she checked my records and gave me a piece of paper with Primary Lateral Sclerosis on it and told me to tell her why I don't have it. > Dear Arlene, Welcome to our group. My name is Bonnie. First, let me say how sorry I am for all the difficulties you are dealing with. I can appreciate how difficult it is to wait for a diagnosis while your abilities are geting worse. I wish you better days ahead - they will come. I am a person with PLS, diagnosedafter 2 years of tests. Hang in there, we are here for you. Be well, Bonnie > My speech is terrible, have bouts of inhaling air all at once, only pain is in hamstring. > no balance, started in left leg and has progressed to right. > > My blood pressure in higher lying than standing, but the neuro knows this. > > Started off on diazapam, stopped and put me on zanaflex, stopped and tried atavin, added baclofen 60 mgs (but I only did 30 per day because I wasn't walking as well) then added sinement (which seemed to help) with diazapam instead of atavin. My last trip to Houston he said none of the meds helped and the next thing was ivig. I told him no. > > Am now on 15 mgs. of diazapam and 60 mgs of baclofen, 1200 of COq10, 1200 mgs of E. > > Am not excersing at this time. I did for 45 minutes a day until I fell headfirst into the side of the bathtub and fractured my cheekbone. Waited two weeks and got up and put the exercise tape on turned loose of the walker to raise my arms up for the breathing and fell straight back and hit a table and had a knot the size of a baseball. Put ice on it stayed awake and didn't get sick. Figured it was all in a day's work around here. > > So many of this fits SMS and also MSA. > > Can any one add anything to this confusing mess? > > My husband is my caregiver. (he does well but thnks making the bed is straighting the bedspread and finding the sheet is a challenge). > Hope this gets through as I am new to the computer as I feel sure Yahoo could confirm that. > > Smiles to you, > > Arlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 Welcome aboard, Arlene. So many things you write about ring true with what I have read in PLS-Friends messages. The balance problem is a big one for me, too. I have a stretches and weights routine that I do in my bedroom -- falling on the bed is softer that either the bath tub or the dining room table. Hope you find a more definitive diagnosis. For me, having that gave more focus to coping. Dorothy > > Hi all, > > I am a new member and not diagnosed definitely. I have had walking and balance problems for 3 and a half years. I live in Longview, Tex. Had been going to one of the very best and renown neuros in Houston at Baylor College of Medicine for two years. He diagnosed Stiffman Syndrome because of lordosis, startle effect (Poured a cup of coffee down the phone when phone rang laying on the bar, that one took a while to ring again). Was neg on both Gad tests sent to Mayo and had normal EMG. I am on a support group for SMS and do not have the spasms they have. I am on a walker full time for the past year, three years ago I had three antique spots in Jefferson and Longview. > > I have a new neuro here in Longview and she checked my records and gave me a piece of paper with Primary Lateral Sclerosis on it and told me to tell her why I don't have it. > > My speech is terrible, have bouts of inhaling air all at once, only pain is in hamstring. > no balance, started in left leg and has progressed to right. > > My blood pressure in higher lying than standing, but the neuro knows this. > > Started off on diazapam, stopped and put me on zanaflex, stopped and tried atavin, added baclofen 60 mgs (but I only did 30 per day because I wasn't walking as well) then added sinement (which seemed to help) with diazapam instead of atavin. My last trip to Houston he said none of the meds helped and the next thing was ivig. I told him no. > > Am now on 15 mgs. of diazapam and 60 mgs of baclofen, 1200 of COq10, 1200 mgs of E. > > Am not excersing at this time. I did for 45 minutes a day until I fell headfirst into the side of the bathtub and fractured my cheekbone. Waited two weeks and got up and put the exercise tape on turned loose of the walker to raise my arms up for the breathing and fell straight back and hit a table and had a knot the size of a baseball. Put ice on it stayed awake and didn't get sick. Figured it was all in a day's work around here. > > So many of this fits SMS and also MSA. > > Can any one add anything to this confusing mess? > > My husband is my caregiver. (he does well but thnks making the bed is straighting the bedspread and finding the sheet is a challenge). > Hope this gets through as I am new to the computer as I feel sure Yahoo could confirm that. > > Smiles to you, > > Arlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 Good Morning and Welcome,Arlene! You will find lots of support here, knowledge and great ideas. Hopefully in time a proper diagnosis will made and you will be comfortable with that. Good luck and hope to talk to you soon. Re: new member Welcome aboard, Arlene. So many things you write about ring true with what I have read in PLS-Friends messages. The balance problem is a big one for me, too. I have a stretches and weights routine that I do in my bedroom -- falling on the bed is softer that either the bath tub or the dining room table. Hope you find a more definitive diagnosis. For me, having that gave more focus to coping. Dorothy > > Hi all, > > I am a new member and not diagnosed definitely. I have had walking and balance problems for 3 and a half years. I live in Longview, Tex. Had been going to one of the very best and renown neuros in Houston at Baylor College of Medicine for two years. He diagnosed Stiffman Syndrome because of lordosis, startle effect (Poured a cup of coffee down the phone when phone rang laying on the bar, that one took a while to ring again). Was neg on both Gad tests sent to Mayo and had normal EMG. I am on a support group for SMS and do not have the spasms they have. I am on a walker full time for the past year, three years ago I had three antique spots in Jefferson and Longview. > > I have a new neuro here in Longview and she checked my records and gave me a piece of paper with Primary Lateral Sclerosis on it and told me to tell her why I don't have it. > > My speech is terrible, have bouts of inhaling air all at once, only pain is in hamstring. > no balance, started in left leg and has progressed to right. > > My blood pressure in higher lying than standing, but the neuro knows this. > > Started off on diazapam, stopped and put me on zanaflex, stopped and tried atavin, added baclofen 60 mgs (but I only did 30 per day because I wasn't walking as well) then added sinement (which seemed to help) with diazapam instead of atavin. My last trip to Houston he said none of the meds helped and the next thing was ivig. I told him no. > > Am now on 15 mgs. of diazapam and 60 mgs of baclofen, 1200 of COq10, 1200 mgs of E. > > Am not excersing at this time. I did for 45 minutes a day until I fell headfirst into the side of the bathtub and fractured my cheekbone. Waited two weeks and got up and put the exercise tape on turned loose of the walker to raise my arms up for the breathing and fell straight back and hit a table and had a knot the size of a baseball. Put ice on it stayed awake and didn't get sick. Figured it was all in a day's work around here. > > So many of this fits SMS and also MSA. > > Can any one add anything to this confusing mess? > > My husband is my caregiver. (he does well but thnks making the bed is straighting the bedspread and finding the sheet is a challenge). > Hope this gets through as I am new to the computer as I feel sure Yahoo could confirm that. > > Smiles to you, > > Arlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 MY NAME IS CATHY AND I AM 45 AND WAS DIAGNOSED WITH PLS 2 MONTHS AGO. MY SYMPTOMS STARTED 3 YEARS AGO AFTER BEING THROWN FROM A GALLOPING HORSE AND HITTING A 5 RAIL STEEL GATE. I BROKE MY ANKLE, TWO RIBS, PUNTURED MY LUNG AND HIT MY HEAD. AFTER HEELING FROM THAT, I FEEL AND SAT ON THE SAME ANKLE AND BROKE THE BONE INSIDE & OUT. AFTER HEELING FROM THAT 8 MONTHS LATER I FEEL DOWN MY STAIRS OUTSIDE AND BROKE MY COLLAR BONE. LAST YEAR I HAD A HYSTERECTOMY DUE TO LARGE CYSTS AND CAUSING PRESSURE ON THE SYATIC NERVE. STILL WALKED FUNNY LATE LAST YEAR STARTED SEEING NEUROLOGISTS, HAD SPINAL TAPS, MRI'S, BLOOD TESTS, ANGOGRAMS AND AFTER ALL TESTS CAME BACK NORMAL I WAS LEFT WITH PLS TO DEAL WITH. I FALL OFTEN, BROKEN RIBS ON THE TUB, FALL GETTING OUT OF THE CAR AND HAVE BECOME VERY COLORFUL-IN PURPPLE AND GREEN BRUISES. NOW USING A CANE TO STABILIZE, GOING TO THERAPY 2 TIMES AWEEK, SWIM EVERYDAY. I AM ON BACLAFIN AND LOOKING INTO THE PUMP, LORAZAPAM, CELEXA, SOMA. IN THE LAST FEW MONTHS I HAVE STARTED MENOPAUSE SYMPTOMS- LIFE JUST KEEPS ON DISHING IT OUT, SO YOU HAVE TO ROLL WITH THE PUNCHED OR FALLS AS IT IS. KEEP STRONG, KEEP MOVING, KEEP ASKING QUESTIONS AND PRAYING THERE MIGHT BE A CURE IN THE FUTURE. THE PLS FRIENDS HAS HELPED ME A LOT IN PAST MONTH TO UNDERSTAND WHAT MAY COME NEXT. THANK CATHY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Gee , at least you can't say that you weren't active! I love horses but now couldn't even get my leg up and over. I'd have to have a crane to lift me but then I probably wouldn't have the balance even to stay on. :-) (Like I'm going to try that!) I guess you're doing all you can do by just hanging in there. We're all so different that we really don't know what our future holds...but we all think it's going to hold good things. Gentner Fremont, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2003 Report Share Posted July 4, 2003 Hi Greg, My husband Mike has had PLS for 8-10 years. It started on the left and is progressing to the right. He exercises and stretches all the time. When he first started his " PLS exercises " he couldn't move the fingers on his hand. He worked hard and got the muscle tone back and can now use the hand, ever so slowly, but it works. If you are interested in finding out more you can write to him at mikeschroeder@... or to me at aschroe@.... Over the long haul he is losing the battle as the PLS progresses. He uses a walker and wheelchair (depending on what he's doing). But he doesn't have trouble with muscle spasms and tightness is currently not a huge problem. Ann > I wanted to say hello. I'm new to the group my name is Gregg. I was > recently diagnosed with PLS and wanted to check out the group. I'm > 35 yrs. old and my symptoms started about 3yrs. ago and so far it > only seem's to affect my legs and lower back. I just left work > because of the fatiuge in legs. I have just applied for SSDI. I > would appreciate if anyone has any advice for me. > > If anyone has any ideas or has themselves had to retrain in a > different occupation I would love to hear from you. It has been > very hard to leave work and not be sure where to go from there. I > have been a mechanic straight out of high school. > > Also if anyone has good ideas on how to keep the symptoms at bay > from PLS I could use the advice. Help to prevent fatuige and > stiffness and feeling tightness in my muscles. > > Gregg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 Hi Brett, Oh what a hard story you have. Welcome to our group. I am so very sorry this monster has so effected your family. Heartbreaking. You have come to the right spot to receive any help and comfort or information we can offer. I think you need to talk to your brothers for yourself as well as their well being. Do you live close to them? I would not put this off. The thing you need to know about thisgroup is we understand how you feel with this diagnosis. People think they get it they don't We do get it. So we are here for you. Stay in touch.God Bless You. Love and Prayers, Peggy ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." hello everyone I was diagnosed on nov 27th. with familial IPF my mother died just three years ago and her mother died before I was even born. I am 40 yrs. old and still remember the pain and suffering my mother went through like it was yesterday. I was diagnosed pretty early I have had numerous chest x-rays ,ct scans and breathing tests all within this last year and finally got a lung biopsy (v.a.t.s) on nov. 8th to confirm the disease . all this time for the most part I have not had many symptoms , the x-rays and scans showed scarring and inflammation but my breathing is really not that bad .I guess now Im wondering when does it all start Im trying not to think about it but it's hard not to. the bad thing is I have not told my brothers yet and I need to because I am an identical triplet , and so they too, should probably be checked out, but anyway, I just wanted to say hello to everyone and look forward to talking to each one of you.... BRETT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 Hello Brett, I'm sorry that you have IPF, but welcome to the site. I'm new too, but I'm pleased to say that this site is fab I look forward with chatting to you Love Ze xx>> hello everyone I was diagnosed on nov 27th. with familial IPF my mother died just three > years ago and her mother died before I was even born. I am 40 yrs. old and still remember > the pain and suffering my mother went through like it was yesterday. I was diagnosed pretty > early I have had numerous chest x-rays ,ct scans and breathing tests all within this last year > and finally got a lung biopsy (v.a.t.s) on nov. 8th to confirm the disease . all this time for the > most part I have not had many symptoms , the x-rays and scans showed scarring and > inflammation but my breathing is really not that bad .I guess now Im wondering when does > it all start Im trying not to think about it but it's hard not to. the bad thing is I have not told > my brothers yet and I need to because I am an identical triplet , and so they too, should > probably be checked out, but anyway, I just wanted to say hello to everyone and look forward > to talking to each one of you.... BRETT> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 welcome brett sorry about your diagnosis but we all help each other here. i was diagnosed in june 06 and am 48. keep away from irritants and do your best to avoid anything that can cause an exacerbation of your condition. i'm not on o2 and work hard at keeping myself well. wow a triplet. you boys must have had some fun when you were young. have you noticed our photo section? i'd really appreciate some photos of the brothers and your baby. may uip 06.06 glasgow, scotland > > hello everyone I was diagnosed on nov 27th. with familial IPF my mother died just three > years ago and her mother died before I was even born. I am 40 yrs. old and still remember > the pain and suffering my mother went through like it was yesterday. I was diagnosed pretty > early I have had numerous chest x-rays ,ct scans and breathing tests all within this last year > and finally got a lung biopsy (v.a.t.s) on nov. 8th to confirm the disease . all this time for the > most part I have not had many symptoms , the x-rays and scans showed scarring and > inflammation but my breathing is really not that bad .I guess now Im wondering when does > it all start Im trying not to think about it but it's hard not to. the bad thing is I have not told > my brothers yet and I need to because I am an identical triplet , and so they too, should > probably be checked out, but anyway, I just wanted to say hello to everyone and look forward > to talking to each one of you.... BRETT > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 Brett, Welcome to our group. Yes, you do need to talk to your brothers. My prayer is that you will have access to excellent care and that your disease will progress slowly. We have a few people waiting for transplant. There are also those with familial IPF. Perhaps you will hear from them. Whatever we can do to help you with your journey, please ask. We are all here because we need help with the struggle. We will help and we will ask you for help. Stick around. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> hello everyone I was diagnosed on nov 27th. with familial IPF my mother died just three > years ago and her mother died before I was even born. I am 40 yrs. old and still remember > the pain and suffering my mother went through like it was yesterday. I was diagnosed pretty > early I have had numerous chest x-rays ,ct scans and breathing tests all within this last year > and finally got a lung biopsy (v.a.t.s) on nov. 8th to confirm the disease . all this time for the > most part I have not had many symptoms , the x-rays and scans showed scarring and > inflammation but my breathing is really not that bad .I guess now Im wondering when does > it all start Im trying not to think about it but it's hard not to. the bad thing is I have not told > my brothers yet and I need to because I am an identical triplet , and so they too, should > probably be checked out, but anyway, I just wanted to say hello to everyone and look forward > to talking to each one of you.... BRETT> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 Welcome Brett, I'm sorry you've ended up scoring the lousy gene...your brothers clearly need to be checked too. What a huge load to carry. I'm in the 'mild' stage of this disease (ie I don't need oxygen yet, unless I'm doing long-haul air travel!) & like you i've been wondering how fast it'll progress...unfortunately there's no timeframe that fits across the board. You'll find out over time how fast/slow YOU progress..wise AFTER the event is the story from what I've been told. In the meantime, Bruce is right ,do the DECAL or DECALF (With Fun added) We're good listeners & responders so make use of us! Regards, in Oz IPF: Fibrotic NSIP/UIP??? Reynauds' May 2007 > hello everyone I was diagnosed on nov 27th. with familial IPF my mother died just three > years ago and her mother died before I was even born. I am 40 yrs. old and still remember > the pain and suffering my mother went through like it was yesterday. I was diagnosed pretty > early I have had numerous chest x-rays ,ct scans and breathing tests all within this last year > and finally got a lung biopsy (v.a.t.s) on nov. 8th to confirm the disease . all this time for the > most part I have not had many symptoms , the x-rays and scans showed scarring and > inflammation but my breathing is really not that bad .I guess now Im wondering when does > it all start Im trying not to think about it but it's hard not to. the bad thing is I have not told > my brothers yet and I need to because I am an identical triplet , and so they too, should > probably be checked out, but anyway, I just wanted to say hello to everyone and look forward > to talking to each one of you.... BRETT> > > > > > Never miss a thing. Make Yahoo your homepage. > > > > > > > > ____________________________________________________________________________________> Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 , I like the addition of "FUN" to DECAL...DECALF it is!!! -- Z.fibriotic NSIP/05/ "mild" PH 10/07 PA Reynaud's too!!! Potter, reader,carousel lover, and MomMom to Darah "I'm gonna be iron like a lion in Zion." Bob Marley -------------- Original message -------------- Welcome Brett, I'm sorry you've ended up scoring the lousy gene...your brothers clearly need to be checked too. What a huge load to carry. I'm in the 'mild' stage of this disease (ie I don't need oxygen yet, unless I'm doing long-haul air travel!) & like you i've been wondering how fast it'll progress...unfortunately there's no timeframe that fits across the board. You'll find out over time how fast/slow YOU progress..wise AFTER the event is the story from what I've been told. In the meantime, Bruce is right ,do the DECAL or DECALF (With Fun added) We're good listeners & responders so make use of us! Regards, in Oz IPF: Fibrotic NSIP/UIP??? Reynauds' May 2007 > hello everyone I was diagnosed on nov 27th. with familial IPF my mother died just three > years ago and her mother died before I was even born. I am 40 yrs. old and still remember > the pain and suffering my mother went through like it was yesterday. I was diagnosed pretty > early I have had numerous chest x-rays ,ct scans and breathing tests all within this last year > and finally got a lung biopsy (v.a.t.s) on nov. 8th to confirm the disease . all this time for the > most part I have not had many symptoms , the x-rays and scans showed scarring and > inflammation but my breathing is really not that bad .I guess now Im wondering when does > it all start Im trying not to think about it but it's hard not to. the bad thing is I have not told > my brothers yet and I need to because I am an identical triplet , and so they too, should > probably be checked out, but anyway, I just wanted to say hello to everyone and look forward > to talking to each one of you.... BRETT> > > > > > Never miss a thing. Make Yahoo your homepage. > > > > > > > > _______________________________________________________________________ _____________> Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 Why am I NOT surprised Lady Lioness of Zioness! The good thing about FUN is that it comes in soo many different forms!!! Cheers, in Oz> > hello everyone I was diagnosed on nov 27th. with familial IPF my mother died just three > > years ago and her mother died before I was even born. I am 40 yrs. old and still remember > > the pain and suffering my mother went through like it was yesterday. I was diagnosed pretty > > early I have had numerous chest x-rays ,ct scans and breathing tests all within this last year > > and finally got a lung biopsy (v.a.t.s) on nov. 8th to confirm the disease . all this time for the > > most part I have not had many symptoms , the x-rays and scans showed scarring and > > inflammation but my breathing is really not that bad .I guess now Im wondering when does > > it all start Im trying not to think about it but it's hard not to. the bad thing is I have not told > > my brothers yet and I need to because I am an identical triplet , and so they too, should > > probably be checked out, but anyway, I just wanted to say hello to everyone and look forward > > to talking to each one of you.... BRETT> > > > > > > > > > > > Never miss a thing. Make Yahoo your homepage. > > > > > > > > > > > > > > > > ____________________________________________________________________________________> > Be a better friend, newshound, and > > know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 , I think we could be sisters!!!!A great party with wonderful people to share in the fun and delicious food and drink is still my most enjoyable activity!!! I'll save up many energy hours to go to an in-person party!!! Your party was the best virtual party ever!!!! You are really creative and your sense of humor is fantastic!!! Again, Thanks for the fun!!! I'm wishing you and your family a wonderful holiday season.. Z fibriotic NSIP/05 Z fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marley wrote: Why am I NOT surprised Lady Lioness of Zioness! The good thing about FUN is that it comes in soo many different forms!!! Cheers, in Oz > > hello eeryone I was diagnosed on nov 27th. with familial IPF my mother died just three > > years ago and her mother died before I was even born. I am 40 yrs. old and still remember > > the pain and suffering my mother went through like it was yesterday. I was diagnosed pretty > > early I have had numerous chest x-rays ,ct scans and breathing tests all within this last year > > and finally got a lung biopsy (v.a.t.s) on nov. 8th to confirm the disease . all this time for the > > most part I have not had many symptoms , the x-rays and scans showed scarring and > > inflammation but my breathing is really not that bad .I guess now Im wondering when does > > it all start Im trying not to think about it but it's hard not to. the bad thing is I have not told > > my brothers yet and I need to because I am an identical triplet , and so they too, should > > probably be checked out, but anyway, I just wanted to say hello to everyone andlook forward > > to talking to each one of you.... BRETT > > > > > > > > > > > > Never miss a thing. Make Yahoo your homepage. > > > > > > > > > > > > > > > > ____________________________________________________________________________________ > > Be a better friend, newshound, and > > know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > > > No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.16.17/1179 - Release Date: 12/9/2007 11:06 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2007 Report Share Posted December 11, 2007 Thanks, Bruce, for your words of advice. All of us benefit from the knowledge of this board. And us newcomers have so much to learn! gigi ILD 3/07 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 December 11, 2007 Report Share Posted December 11, 2007 Officially changed to Decalf. > > hello everyone I was diagnosed on nov 27th. with familial IPF my mother died just three > > years ago and her mother died before I was even born. I am 40 yrs. old and still remember > > the pain and suffering my mother went through like it was yesterday. I was diagnosed pretty > > early I have had numerous chest x-rays ,ct scans and breathing tests all within this last year > > and finally got a lung biopsy (v.a.t.s) on nov. 8th to confirm the disease . all this time for the > > most part I have not had many symptoms , the x-rays and scans showed scarring and > > inflammation but my breathing is really not that bad .I guess now Im wondering when does > > it all start Im trying not to think about it but it's hard not to. the bad thing is I have not told > > my brothers yet and I need to because I am an identical triplet , and so they too, should > > probably be checked out, but anyway, I just wanted to say hello to everyone and look forward > > to talking to each one of you.... BRETT > > > > > > > > > > > > Never miss a thing. Make Yahoo your homepage. > > > > > > > > > > > > > > > > ______________________________________________________________________ ______________ > > Be a better friend, newshound, and > > know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2007 Report Share Posted December 11, 2007 Hi sher; sorry took so long to get back w/you I live in rockford mi. just north of grand rapids . the vats. procedure was fine , the only thing I didn't care for was the chest tube but luckily at the university of michigan hospital the procedure is done as outpatient so they took it out just before I went home . they at first said they wanted to keep me overnight because they had a hard time getting the airway tube down my throat past my voice box and into the lung they were not working on. they needed to do this so they can keep you breathing while the other lung is collapsed . since it took them four tries to get it down their they thought my throat would swell up. but it didn't , it was just sore, so they let me go home after I begged and pleaded. after that other than the 2-hour car ride witch every bump was painful , your just really sore for a good two weeks . BRETT Re: new member Brett...welcome and we're glad to have you with us. Not glad however for the reason you are here. Will you tell me how your VATS procedure went? Was it painful? There is often a discussion re: open lung bios/Vats. I'm trying to make my own decision should it come up in the near future. However, I'm going on 70 and have other complicated health issues. Taking Prednisone is not an option for me. I'm interested how VATS went for you. Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there! Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2007 Report Share Posted December 11, 2007 Brett, Welcome to the group..sorry I'm late in the best wishes!!! I cannot imagine trying to raise three identical awfully cute little boys..the Indian picture was so sweet! Your family will be as supportive as they can be...they may not "get it" but that's OK,,,we do! Z fibriotic NSIP/05 Z fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marley BRETT Bowser wrote: thanks ; peggy & sandie yes I'm sure my mother was busy, I have a hard enough time keeping up with one child let alone three, but I'm sure we were very well behaved little boy's (doubt it) . as far as my family goes , my dad knows and my wife knows and also my mother and father in-law, my sister knows that I have some sort of lung disease but she doesn't know what the biopsy results were. I will tell my two brothers and sister this weekend but only because I want them to get checked out themselves, I don't want them feeling sorry for me .... I have a lot more pictures to show everyone so keep an eye out well I have to get back to work I'll check back soon. brett/familial UIP/11/27/07mi ----- Original Message ---- From: stokh24761 <stokhsomtel (DOT) .net> To: Breathe-Support Sent: Tuesday, December 11, 2007 2:01:19 PM Subject: Re: new member Welcome Brett, this one must have slipped right on passed me I usually see all the new posts. Sorry you have to be here but thank gosh you were being checked and arent having any breathing problems yet and I agree with peggi I think you will find much comfort in your family. So sorry to hear about your mother and grandmother, I am sure they are all watching over you now. You will find this one terrific, amazing, gracious, funny, heartfelt, caring, loving group of people and no matter what, through thick and thin, we are all here, so I am glad you found us! Sandie > > > hello everyone I was diagnosed on nov 27th. with familial IPF my > mother died just three > > > years ago and her mother died before I was even born. I am 40 yrs. > old and still remember > > > the pain and suffering my mother went through like it was yesterday. > I was diagnosed pretty > > > early I have had numerous chest x-rays ,ct scans and breathing tests > all within this last year > > > and finally got a lung biopsy (v.a.t.s) on nov. 8th to confirm the > disease . all this time for the > > > most part I have not had many symptoms , the x-rays and scans showed > scarring and > > > inflammation but my breathing is really not that bad .I guess now Im > wondering when does > > > it all start Im trying not to think about it but it's hard not to. > the bad thing is I have not told > > > my brothers yet and I need to because I am an identical triplet , > and so they too, should > > > probably be checked out, but anyway, I just wanted to say hello to > everyone and look forward > > > to talking to each one of you.... BRETT > > > > > > > > > > > > > > > > > > Never miss a thing. Make Yahoo your homepage. > > > > > > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ _________ _________ _________ _ __\ > ____________ > > > Be a better friend, newshound, and > > > know-it-all with Yahoo! Mobile. Try it now. > http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ > > > > > > Looking for last minute shopping deals? Find them fast with Yahoo! Search. No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.17.0/1180 - Release Date: 12/10/2007 2:51 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2007 Report Share Posted December 11, 2007 Thanks Brett...Myself and others are always interested in these procedures. Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2007 Report Share Posted December 11, 2007 Oh my....I stayed from Wednesday until Sunday...... Now pulling the tube out to me was nothing. Of course part of the reason is the hell I'd just been through with her removing the tape that was holding it. The nurse didn't shave me down far enough so the top tape was shaved area and the bottom was not. For the tube she told me to inhale and then exhale strongly....on exhale it came out and I didn't feel a thing. > > Hi sher; sorry took so long to get back w/you I live in rockford mi. just north of grand rapids . the vats. procedure was fine , the only thing I didn't care for was the chest tube but luckily at the university of michigan hospital the procedure is done as outpatient so they took it out just before I went home . they at first said they wanted to keep me overnight because they had a hard time getting the airway tube down my throat past my voice box and into the lung they were not working on. they needed to do this so they can keep you breathing while the other lung is collapsed . since it took them four tries to get it down their they thought my throat would swell up.. but it didn't , it was just sore, so they let me go home after I begged and pleaded. after that other than the 2-hour car ride witch every bump was painful , your just really sore for a good two weeks . > BRETT > Re: new member > > > Brett...welcome and we're glad to have you with us. Not glad however for the reason you are here. > Will you tell me how your VATS procedure went? Was it painful? There is often a discussion re: open lung bios/Vats. I'm trying to make my own decision should it come up in the near future.. However, I'm going on 70 and have other complicated health issues. Taking Prednisone is not an option for me. > I'm interested how VATS went for you. > Sher; ipf 3-06; OR. > Don't fret about tomorrow, God is already there! > > > > > > > > > ______________________________________________________________________ ______________ > Looking for last minute shopping deals? > Find them fast with Yahoo! Search. http://tools.search.yahoo.com/newsearch/category.php?category=shopping > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2007 Report Share Posted December 11, 2007 Heck Bruce I feel honoured... an official amendment...WOW Yours in collaboration, in Oz > > > hello everyone I was diagnosed on nov 27th. with familial IPF my > mother died just three > > > years ago and her mother died before I was even born. I am 40 > yrs. old and still remember > > > the pain and suffering my mother went through like it was > yesterday. I was diagnosed pretty > > > early I have had numerous chest x-rays ,ct scans and breathing > tests all within this last year > > > and finally got a lung biopsy (v.a.t.s) on nov. 8th to confirm > the disease . all this time for the > > > most part I have not had many symptoms , the x-rays and scans > showed scarring and > > > inflammation but my breathing is really not that bad .I guess now > Im wondering when does > > > it all start Im trying not to think about it but it's hard not > to. the bad thing is I have not told > > > my brothers yet and I need to because I am an identical triplet , > and so they too, should > > > probably be checked out, but anyway, I just wanted to say hello > to everyone and look forward > > > to talking to each one of you.... BRETT> > > > > > > > > > > > > > > > > > Never miss a thing. Make Yahoo your homepage. > > > > > > > > > > > > > > > > > > > > > > > > > ______________________________________________________________________> ______________> > > Be a better friend, newshound, and > > > know-it-all with Yahoo! Mobile. Try it now. > http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ> > >> >> Quote Link to comment Share on other sites More sharing options...
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