Guest guest Posted December 28, 2003 Report Share Posted December 28, 2003 No problem Joann, I'm glad you like the group. It is fun and this group lifts my spirit when it is down. praying , Carol New Here Hello ,Id like to thank everyone for the warm welcome!! My name is Joanne Im 44yrsold Married 25yrs I have 3 grown kids. My son is 25 and 2 daughters 18 and 20yrs, who help me when there not working or in school. I live in Boston Mass. This has been a rough year with sle,dle and sleep apnea as well as fatigue and numbness in hands and feet. But inspite of all this, I take it one day at a time and being here making friends who understand as well as being supportive helps me alot!! Thank You and(HUGS TO ALL) ..Love Joanne"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2008 Report Share Posted May 8, 2008 Charleen First, let's not jump the gun. Listening to your lungs and a chest xray by a primary physician doesn't really qualify as a basis yet for diagnosis. At the very least a CT scan will be required and a lung doctor. Now, I know he's given you cause to worry and don't know how long the referral will take. Second, if you do have PF, while there are no proven treatments available (the only one commonly tried and may sometimes be effective in slowing the progression although many side effects is Imuran and Prednisone), there is a tremendous amount of information you can gather here about living and enjoying life with PF. Did the doctor have you do a six minute walk and check your oxygen saturation levels? Absent that, as you said, you have no symptoms. It is urgent to get your saturation checked and get on oxygen if your levels are dropping. This is to protect your other organs. However, if you're doing fine today, then focus on that. There is no definitive time table or pattern of the over 200 forms of PF. Sounds to me like you're in excellent shape for your age. While it is possible that you have PF and that it could progress rapidly, its also quite possible you don't have it or that if you do it will progress very slowly. You might start using oxygen in a couple of years for exertion, full time in a couple more, increasing your oxygen in a couple more, taking it up a level in a couple more, another level in a couple more, and to a very high level in a couple more. Oh, that gets you to 80. While I don't want to give you undue hope, understand you haven't had a thorough examination and qualified diagnosis yet and even if you have PF it isn't a death sentence. Most of us use oxygen, but in spite of our disease we're still enjoying life. No, we don't look forward to the worse stages and we do have members who have progressed to difficult stages. But as is often said here, we don't have an expiration date stamped on our butt. Medically, doctors may feel helpless. Lifewise, certainly at your stage, you don't need to. Whether or not you have PF, there is one lesson to be learned quickly. Make the most of every moment and don't put anything off you want to do. I didn't learn that until my diagnosis and, having learned it, in many ways this is the best year of my life. Have oxygen, will travel is my new slogan. > > Hello > > I am a 68 year old Canadian women who was diagnosed on Monday > after my Dr hard some crackles in my lower lobes at my yearly > physical and sent me for a chest xray. I have not seen the > specialist yet. > > I have been trying to educate myself on this dread disease and am > scaring myself to death. > > I have no symptoms, I go to the gym 3 days a week for a 40 minute > cardio aerobic program followed by 10 minutes of muscle work. walk > etc and feel very healthy. > > Is there anything positive regarding treatments about this disease to > hang my hat on? > > Regards > Charleen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2008 Report Share Posted May 8, 2008 Hi Charleen and welcome! I'm sorry you have reason to be here but I hope you'll find the kind of support and friendship here that many of us have. It sounds like you're in the process of getting an accurate diagnosis. My only advice would be to continue along that path. Your new pulmonologist will send you for tests which will help define what is going on with your lungs. The fact that you're still so active and fit is a tremendous factor in your favor. It doesn't sound as though you have alot of symptoms other than what your doctor heard with his stethoscope. Please don't scare yourself to death. You will over the next few weeks get a better idea of what is going on and what your pulmonologist suggests doing about it. My grandmother used to tell me not to "borrow trouble" and it's something I concentrate on doing now more than ever. Take this one step at a time and know that you've got a whole pack of folks here pulling for you! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive New here HelloI am a 68 year old Canadian women who was diagnosed on Mondayafter my Dr hard some crackles in my lower lobes at my yearly physical and sent me for a chest xray. I have not seen the specialist yet.I have been trying to educate myself on this dread disease and am scaring myself to death.I have no symptoms, I go to the gym 3 days a week for a 40 minute cardio aerobic program followed by 10 minutes of muscle work. walketc and feel very healthy.Is there anything positive regarding treatments about this disease to hang my hat on?RegardsCharleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2008 Report Share Posted May 8, 2008 > > Hi Charleen and welcome! I'm sorry you have reason to be here but I hope you'll find the kind of support and friendship here that many of us have. > It sounds like you're in the process of getting an accurate diagnosis. My only advice would be to continue along that path. Your new pulmonologist will send you for tests which will help define what is going on with your lungs. > The fact that you're still so active and fit is a tremendous factor in your favor. It doesn't sound as though you have alot of symptoms other than what your doctor heard with his stethoscope. > Please don't scare yourself to death. You will over the next few weeks get a better idea of what is going on and what your pulmonologist suggests doing about it. My grandmother used to tell me not to " borrow trouble " and it's something I concentrate on doing now more than ever. Take this one step at a time and know that you've got a whole pack of folks here pulling for you! > Beth > Age 48 Fibrotic NSIP 06/06 > > Change everything. Love and Forgive > > > > > > New here > > > Hello > > I am a 68 year old Canadian women who was diagnosed on Monday > after my Dr hard some crackles in my lower lobes at my yearly > physical and sent me for a chest xray. I have not seen the > specialist yet. > > I have been trying to educate myself on this dread disease and am > scaring myself to death. > > I have no symptoms, I go to the gym 3 days a week for a 40 minute > cardio aerobic program followed by 10 minutes of muscle work. walk > etc and feel very healthy. > > Is there anything positive regarding treatments about this disease to > hang my hat on? > > Regards > Charleen > Thank you so much for the encouragement Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2008 Report Share Posted May 8, 2008 > > > > Hello > > > > I am a 68 year old Canadian women who was diagnosed on Monday > > after my Dr hard some crackles in my lower lobes at my yearly > > physical and sent me for a chest xray. I have not seen the > > specialist yet. > > > > I have been trying to educate myself on this dread disease and am > > scaring myself to death. > > > > I have no symptoms, I go to the gym 3 days a week for a 40 minute > > cardio aerobic program followed by 10 minutes of muscle work. walk > > etc and feel very healthy. > > > > Is there anything positive regarding treatments about this disease to > > hang my hat on? > > > > Regards > > Charleen > > >As always I love reading your posts . You are a wealth of information on this . I am doing what you are enjoying everyday . Worry will only make everything worse . Bring and thing positive thing's into your life . I sort of look at this as a blessing . I was working all the time . Away from home for months at a time . Now I get to see my grandson and his dad and my daughter everyday , I am amazed at what a 4 yr old can come up with . So you see there are good thing's and bad thing's about everything that happens to you . God Bless you all . I will try the liquid oxygen today because of the information I got from Mr Bruce Morland . Thank you all and God Bless you all form Walt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2008 Report Share Posted May 8, 2008 Walt Thanks....now liquid may or may not be your preference. Good luck in finding out. Interesting you mentioned PF leading to you seeing your children/grandchildren more. I talked to a man recently whose wife has PF. Knowing him no telling when if ever he would have retired. But, he did to help take care of her. As a result he's had more time with her than he ever would have and more time to enjoy every aspect of life. It's so unfortunate it takes something like this to make some of us, like me, wake up and make the most of life. In this country, we spend the most time working and least time with our families of any comparable country by far. The more we make, the more we need. We don't simplify and slow down on our own. Glad to see you're enjoying yourself. > > > > > > Hello > > > > > > I am a 68 year old Canadian women who was diagnosed on Monday > > > after my Dr hard some crackles in my lower lobes at my yearly > > > physical and sent me for a chest xray. I have not seen the > > > specialist yet. > > > > > > I have been trying to educate myself on this dread disease and am > > > scaring myself to death. > > > > > > I have no symptoms, I go to the gym 3 days a week for a 40 minute > > > cardio aerobic program followed by 10 minutes of muscle work. walk > > > etc and feel very healthy. > > > > > > Is there anything positive regarding treatments about this > disease to > > > hang my hat on? > > > > > > Regards > > > Charleen > > > > >As always I love reading your posts . You are a wealth of > information on this . I am doing what you are enjoying everyday . > Worry will only make everything worse . Bring and thing positive > thing's into your life . I sort of look at this as a blessing . I was > working all the time . Away from home for months at a time . Now I > get to see my grandson and his dad and my daughter everyday , I am > amazed at what a 4 yr old can come up with . So you see there are > good thing's and bad thing's about everything that happens to you . > God Bless you all . I will try the liquid oxygen today because of the > information I got from Mr Bruce Morland . Thank you all and God Bless > you all form Walt > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2008 Report Share Posted May 8, 2008 Hi Charleen!...welcome to our 'air-family'. I can't add anything to what Bruce said. He is our groovy guru. However I will tell you I was dx (diagnosed) 3-06 with IPF. Remained stable for 2 years, have been on O2 since March, as needed. (BTW I'm 69) There are different strains of this disease, as you will learn and my dx has been changed now to NSIP....if I can spell it for you! Non-Specific Interstitial Pneumonisitis or something like that. hahaha. Do be sure and see a pulmonologist and do definitely get a second opinion and no matter what you are told do not rush into a lung biopsy for dx. As you get information, pass it by the family, you will get a wealth of response. This is the most caring and safe place to be in the world. (I'd want to be here if I did not have this disease). God blesses us with each other to make walking this path a bit easier. Glad you found us. I found this site two days after I was dx. Most don't for waaaaaaaay longer than that. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: New here CharleenFirst, let's not jump the gun. Listening to your lungs and a chest xrayby a primary physician doesn't really qualify as a basis yet fordiagnosis. At the very least a CT scan will be required and a lungdoctor. Now, I know he's given you cause to worry and don't know howlong the referral will take.Second, if you do have PF, while there are no proven treatmentsavailable (the only one commonly tried and may sometimes be effective inslowing the progression although many side effects is Imuran andPrednisone), there is a tremendous amount of information you can gatherhere about living and enjoying life with PF.Did the doctor have you do a six minute walk and check your oxygensaturation levels? Absent that, as you said, you have no symptoms. It isurgent to get your saturation checked and get on oxygen if your levelsare dropping. This is to protect your other organs. However, if you'redoing fine today, then focus on that. There is no definitive time tableor pattern of the over 200 forms of PF.Sounds to me like you're in excellent shape for your age. While it ispossible that you have PF and that it could progress rapidly, its alsoquite possible you don't have it or that if you do it will progress veryslowly. You might start using oxygen in a couple of years for exertion,full time in a couple more, increasing your oxygen in a couple more,taking it up a level in a couple more, another level in a couple more,and to a very high level in a couple more. Oh, that gets you to 80.While I don't want to give you undue hope, understand you haven't had athorough examination and qualified diagnosis yet and even if you have PFit isn't a death sentence. Most of us use oxygen, but in spite of ourdisease we're still enjoying life. No, we don't look forward to theworse stages and we do have members who have progressed to difficultstages. But as is often said here, we don't have an expiration datestamped on our butt. Medically, doctors may feel helpless. Lifewise,certainly at your stage, you don't need to. Whether or not you have PF,there is one lesson to be learned quickly. Make the most of every momentand don't put anything off you want to do. I didn't learn that until mydiagnosis and, having learned it, in many ways this is the best year ofmy life. Have oxygen, will travel is my new slogan.>> Hello>> I am a 68 year old Canadian women who was diagnosed on Monday> after my Dr hard some crackles in my lower lobes at my yearly> physical and sent me for a chest xray. I have not seen the> specialist yet.>> I have been trying to educate myself on this dread disease and am> scaring myself to death.>> I have no symptoms, I go to the gym 3 days a week for a 40 minute> cardio aerobic program followed by 10 minutes of muscle work. walk> etc and feel very healthy.>> Is there anything positive regarding treatments about this disease to> hang my hat on?>> Regards> Charleen> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2008 Report Share Posted May 8, 2008 Charleen, First of all, I welcome you to our site. You are among friends. You can learn here and lean here. It is a good place! I will tell you the truth. Pulmonary Fibrosis is a scary thing to read about and it is scary to live with. But, it is doable. There are no guarantees in life and no certainies either. The same is true with PF. Being in good physical condition like you are is a big plus. Continue working out and continue to live your life to the fullest. Statistics are only numbers. I was told 2-4 years....11 years ago! Even though the cure has not been found, I believe it is coming through gene research. Try not to become too anxious until you see a pulmonologist and have more intense testing. That should be happening soon! Glad you are here. Let us know what the pulmo says. We have a couple more Canadians on our board. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> Hello> > I am a 68 year old Canadian women who was diagnosed on Monday> after my Dr hard some crackles in my lower lobes at my yearly > physical and sent me for a chest xray. I have not seen the > specialist yet.> > I have been trying to educate myself on this dread disease and am > scaring myself to death.> > I have no symptoms, I go to the gym 3 days a week for a 40 minute > cardio aerobic program followed by 10 minutes of muscle work. walk> etc and feel very healthy.> > Is there anything positive regarding treatments about this disease to > hang my hat on?> > Regards> Charleen> Quote Link to comment Share on other sites More sharing options...
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