Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 , Wow you have had quit a time of it. All those broken bones reminds me of the rodeo clown I knew he had quit a few spills himself. Sorry you have to have PLS but these folks are a bunch of nice people and have a world of experience so ask anything you need answers to.......Sounds like you have a good attitude about it all and yes life keeps dishing it out but hay at least it will slow you down for a while till there is a cure!!!.............Flora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2003 Report Share Posted July 3, 2003 Welcome to the group Gregg. You will have a lot of your questions answered here. Terrible to have this mess, but your in good company with this group. I take Provigil for fatigue, Baclofen for stiff muscles, and Celebrex for joint pain. I hope that will give you a start, and I hope you dance again. My best to you, Donna > 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 July 4, 2003 Report Share Posted July 4, 2003 Hi Gregg, In CT, there is a state department that offers counseling and retraining to keep you in the work force. Try calling the department of social services to ask about it in your state. My understanding is that it is a federally funded program, so I'm sure that all states have it available. Dolores new member > 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 July 4, 2003 Report Share Posted July 4, 2003 Hi Gregg, In CT, there is a state department that offers counseling and retraining to keep you in the work force. Try calling the department of social services to ask about it in your state. My understanding is that it is a federally funded program, so I'm sure that all states have it available. Dolores new member > 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 July 4, 2003 Report Share Posted July 4, 2003 Dolores: Did you have your gathering? I misplaced the date somewhere in my brain. Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. It's better to have Laugh Wrinkles than Worry Warts! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 Hi Peggy yes they live in the same city as I. we are very close I see cory the youngest of us three (by 2-minutes) every day , he works with me and aron the oldest of us three, I see every other week . Cory & Aron come over to my house to see my 10-month old daughter, who is absolutely perfect . brett --- Peggy wrote: > 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 this > group 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 > > > > > > > > ________________________________________________________________________________\ ____ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs 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, I will echo what everyone else is saying...welcome....but sorry you have to be with us. Are you aware that there is a familial study going on at Duke University? Here's the link: http://www.fpf.duke.edu/. It may be something you and your family would want to check out. This is a great group. Very compassionate. Very concerned. And, we get it. We are all at various stages of pulmonary fibrosis so if you have any questions or concerns, ask away. Of course, you probably are very aware of the disease because of your mom. Anyway, we are here to help in anyway that we can. Leanne uip 1/03 Illinois listed for single lung transplant 10-12-07"brett.bowser" wrote: 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 Hi leanne , yes I am already participating in the study, in fact part of the tissue left over from the biopsy was sent to duke for that study. I guess the only real question I have is, how fast is this disease going to progress ? (not that anyone really knows for sure) everyone is different . I will know more when I meet with my pulmmonologist on the 17th.  to start some sort of treatment , I think   BRETT Re: new member Hi Brett,  I will echo what everyone else is saying...welcome. ...but sorry you have to be with us.  Are you aware that there is a familial study going on at Duke University? Here's the link: http://www.fpf. duke.edu/. It may be something you and your family would want to check out..  This is a great group. Very compassionate. Very concerned. And, we get it. We are all at various stages of pulmonary fibrosis so if you have any questions or concerns, ask away. Of course, you probably are very aware of the disease because of your mom. Anyway, we are here to help in anyway that we can.  Leanne uip 1/03 Illinois listed for single lung transplant 10-12-07"brett.bowser" <brett.bowser@ yahoo.com> wrote: 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. 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 10, 2007 Report Share Posted December 10, 2007 Like all new members, we hate you have to be here, but welcome you here with open arms. I know the memories of the pain and death are difficult, so its going to be more of a challenge for you to concentrate on living. No one can tell you how its going to hit or when, how quickly you'll go downhill. What we can tell you is that you can still have quality life with the disease. The key to where you are is that you have knowledge. So, you can start today with certain things. First, live like we should whether we have this disease or not. Enjoy each moment the most possible. Don't put off things. I know that with the disease I will probably do more things in my life than I would have without even if my life is shorter. Why? Because it has served as a wake up call. I'm working hard on making and fulfilling a list of goals, pleasurable and important goals to me. Second, don't think of the future stages and how bad they might be. Instead, watch those here already in them and you'll see the incredible beauty of how one can still enjoy life throughout each stage. I have seen such strength here. By doing so, I know that even as I have to turn my oxygen higher, I will have a plan to make my life still have value. We all make life too complicated. I think a real key to living with this or any disease is simplification. Find the easy way to do things. Think of that perfect living situation when your health isn't as good. Don't do anything you don't want to. For instance, if a particular holiday has become so much work that the true enjoyment is lost, then bring the pleasure back, which typically just involves time with your loved ones. Third, make sure your health is monitored and you take care of yourself. When you need oxygen use it, knowing its your friend in both helping you function and in protecting your organs. Avoid risks. Get flu shots and pneumonia vaccine. Don't put yourself in a room full of sick people if you can avoid it. Watch your entire health. It's scary....don't think any of us don't feel that. But think for a moment. What really has changed? You know you're going to die now. Didn't you always know that? Now maybe you know to value life more. I know I do and I'm making more of mine. Now you may or may not know what will ultimately lead to death. You know what? You can't and never could do anything about death. No one can. What we all can concentrate on is living. I certainly never forget I have the disease. However, I keep myself busy planning my future. I but tickets and make plans that I can't swear I'll be in condition to do, but I'm going to do my best. I've learned enough to know that even when I'm considerably worse if there is something important I want to do, I'll find a way. Next time people from this forum have a planned outing and get together, I'll be there. I don't care when or where. I'll find a way to load my car with oxygen and make it. I've made the most incredible friends, ironically, as a result of this disease. Yes, I feel the hurt when they are in pain, but I also feel their strength and my life is so enriched knowing them. My initial diagnosis was in August and my VATS in October. When I went to the pulmonologist and was diagnosed, I'd never heard of Interstitial Lung Diseases or Pulmonary Fibrosis, or Idiopathic Pulmonary Fibrosis. My symptoms were mild. I thought I was just out of shape. But when I tried to get in shape, the treadmill was too much. Oh my, the first time I got on it using oxygen I was shocked at how easy it was. I've used it more since diagnosis than my entire life before. Yes, your brothers do need to know. First, so they can be aware to look out for any signs and at least periodically get minimal testing. But, also, so you can be open and honest with them. Everyone you tell will react differently, but once they get over the shock, they will be amazed how well you're doing. That was the biggest thing for my friends. I guess they expected me to look bad. Heck, my gastrointologist told me how much better I looked last Friday than the last time he saw me 9 months ago. Now there will be days you need to vent and we're here for that too. We can understand what no one else in your life can, regardless how hard they try and that is just having the disease. The people here are not just my friends, they are my heros and role models too. I see those so far advanced, some waiting and hoping for transplants, but they give me the strength each day to look toward the future still with hope and knowing I can enjoy it. This is the one place you can say exactly how you feel. Sometimes you hold back with friends and family to protect them. Also, they have their own feelings as it comes to you and sometimes " just don't get it " . Welcome here and strength for the time ahead, however much it is. > > 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 THANK YOU BRUCE can I ask how old you are? Re: new member Like all new members, we hate you have to be here, but welcome you here with open arms. I know the memories of the pain and death are difficult, so its going to be more of a challenge for you to concentrate on living. No one can tell you how its going to hit or when, how quickly you'll go downhill. What we can tell you is that you can still have quality life with the disease. The key to where you are is that you have knowledge. So, you can start today with certain things. First, live like we should whether we have this disease or not. Enjoy each moment the most possible. Don't put off things. I know that with the disease I will probably do more things in my life than I would have without even if my life is shorter. Why? Because it has served as a wake up call. I'm working hard on making and fulfilling a list of goals, pleasurable and important goals to me. Second, don't think of the future stages and how bad they might be. Instead, watch those here already in them and you'll see the incredible beauty of how one can still enjoy life throughout each stage. I have seen such strength here. By doing so, I know that even as I have to turn my oxygen higher, I will have a plan to make my life still have value. We all make life too complicated. I think a real key to living with this or any disease is simplification. Find the easy way to do things. Think of that perfect living situation when your health isn't as good. Don't do anything you don't want to. For instance, if a particular holiday has become so much work that the true enjoyment is lost, then bring the pleasure back, which typically just involves time with your loved ones. Third, make sure your health is monitored and you take care of yourself. When you need oxygen use it, knowing its your friend in both helping you function and in protecting your organs. Avoid risks. Get flu shots and pneumonia vaccine. Don't put yourself in a room full of sick people if you can avoid it. Watch your entire health. It's scary....don' t think any of us don't feel that. But think for a moment. What really has changed? You know you're going to die now. Didn't you always know that? Now maybe you know to value life more. I know I do and I'm making more of mine. Now you may or may not know what will ultimately lead to death. You know what? You can't and never could do anything about death. No one can. What we all can concentrate on is living. I certainly never forget I have the disease. However, I keep myself busy planning my future. I but tickets and make plans that I can't swear I'll be in condition to do, but I'm going to do my best. I've learned enough to know that even when I'm considerably worse if there is something important I want to do, I'll find a way. Next time people from this forum have a planned outing and get together, I'll be there. I don't care when or where. I'll find a way to load my car with oxygen and make it. I've made the most incredible friends, ironically, as a result of this disease. Yes, I feel the hurt when they are in pain, but I also feel their strength and my life is so enriched knowing them. My initial diagnosis was in August and my VATS in October.. When I went to the pulmonologist and was diagnosed, I'd never heard of Interstitial Lung Diseases or Pulmonary Fibrosis, or Idiopathic Pulmonary Fibrosis. My symptoms were mild. I thought I was just out of shape. But when I tried to get in shape, the treadmill was too much. Oh my, the first time I got on it using oxygen I was shocked at how easy it was. I've used it more since diagnosis than my entire life before. Yes, your brothers do need to know. First, so they can be aware to look out for any signs and at least periodically get minimal testing. But, also, so you can be open and honest with them. Everyone you tell will react differently, but once they get over the shock, they will be amazed how well you're doing. That was the biggest thing for my friends. I guess they expected me to look bad. Heck, my gastrointologist told me how much better I looked last Friday than the last time he saw me 9 months ago. Now there will be days you need to vent and we're here for that too. We can understand what no one else in your life can, regardless how hard they try and that is just having the disease. The people here are not just my friends, they are my heros and role models too. I see those so far advanced, some waiting and hoping for transplants, but they give me the strength each day to look toward the future still with hope and knowing I can enjoy it. This is the one place you can say exactly how you feel. Sometimes you hold back with friends and family to protect them. Also, they have their own feelings as it comes to you and sometimes "just don't get it". Welcome here and strength for the time ahead, however much it is. > > 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 > 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 10, 2007 Report Share Posted December 10, 2007 58 going on 18. You'll find those here both younger and much older than you. You'll also read statistics and find how useless they are by knowing the people here. I personally intend to live to be older and more cantankerous than Sher. Now, becoming as crazy as is a challenge, but one worth pursuing. lol > > > > > > 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 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ______________________________________________________________________ ______________ > 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 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! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 Brett...sorry I overlooked extending my sympathy about your family member w/IPF. I think yours is the most family members I have heard of with this same disease. It certainly proves the theory of heredity! God will give you the right words when you speak to your brother and I agree with Peggy, you'll feel better when you face this with him. Congrats on your little daughter. Where do you live? 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 10, 2007 Report Share Posted December 10, 2007 Bruce...Moi? cantankerous? Ahhh Brucie-Boy I'm a role model! Learn from the master, boy. lol 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 10, 2007 Report Share Posted December 10, 2007 Bruce...Moi? cantankerous? Ahhh Brucie-Boy I'm a role model! Learn from the master, boy. lol 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 Ok....why can I not hear the name Gigi without suddenly thinking I'm Maurice Chevalier and singing: Thank heaven for little girls for little girls get bigger every day! Thank heaven for little girls they grow up in the most delightful way! Those little eyes so helpless and appealing one day will flash and send you crashin' thru the ceilin' Thank heaven for little girls thank heaven for them all, no matter where no matter who for without them, what would little boys do? Thank heaven... thank heaven... Thank heaven for little girls! > > 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 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=Ahu06i62sR8HDtDypao8Wcj9tAcJ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2007 Report Share Posted December 11, 2007 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=Ahu06i62sR8HDtDypao8Wcj9tAcJ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2007 Report Share Posted December 11, 2007 Gee thanks Bruce. Now the tune will flit through my mind as well. lol 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 Gee thanks Bruce. Now the tune will flit through my mind as well. lol 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 thanks ; peggy & sandieyes 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 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2007 Report Share Posted December 11, 2007 thanks ; peggy & sandieyes 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 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2007 Report Share Posted December 11, 2007 Skew-whiff, Bent, even WARPED I'm told!!!!! PS I'm happy 2 b your sis' Lady L of Z > > > > 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 Skew-whiff, Bent, even WARPED I'm told!!!!! PS I'm happy 2 b your sis' Lady L of Z > > > > 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 29, 2007 Report Share Posted December 29, 2007 Hey group, I just joined last night to learn more about living with our dreaded disease. I was diagnosed with IPF through a lung biopsy in Jan 06. I have been receiving treatment for nearly 2 years with actimmune injections 3 times a week. My last three 6 month x-rays have shown no spread of the fibrosis and no change in breathing tests results. The actimmune is working and I am not having any of the terrible side effects. Is anyone else out there on actimmune and for how long. Thank goodness for Medicare and tricare for life, it is a very expensive medication. But what is a life worth? Ken Beaird Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.