Guest guest Posted October 15, 2007 Report Share Posted October 15, 2007 Hi Kathie, my name is Joy (joynoel) and I live in Seattle. I am interested in your Hyper. Sensitivity Pneumonitis. I was diagnosed with fibrosis in 3/06. Not until a couple months ago, after the open lung biopsy, did we know I have HP. So, the doc says I live longer than with IPF. I see Dr. Raghu at UofW end of Dec. I wanted a second opinion. So, what can you tell me about your diagnosis and subsequent health from it. Thank you so much. JoyPlease visit..Thanks! www.stores.ebay.com/rhapsodydesignjewelry or www.thehandcraftedjewelrymall.com/joykiefner/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2007 Report Share Posted October 15, 2007 Hi Kathie, my name is Joy (joynoel) and I live in Seattle. I am interested in your Hyper. Sensitivity Pneumonitis. I was diagnosed with fibrosis in 3/06. Not until a couple months ago, after the open lung biopsy, did we know I have HP. So, the doc says I live longer than with IPF. I see Dr. Raghu at UofW end of Dec. I wanted a second opinion. So, what can you tell me about your diagnosis and subsequent health from it. Thank you so much. JoyPlease visit..Thanks! www.stores.ebay.com/rhapsodydesignjewelry or www.thehandcraftedjewelrymall.com/joykiefner/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2007 Report Share Posted October 15, 2007 Hi Kathie, my name is Joy (joynoel) and I live in Seattle. I am interested in your Hyper. Sensitivity Pneumonitis. I was diagnosed with fibrosis in 3/06. Not until a couple months ago, after the open lung biopsy, did we know I have HP. So, the doc says I live longer than with IPF. I see Dr. Raghu at UofW end of Dec. I wanted a second opinion. So, what can you tell me about your diagnosis and subsequent health from it. Thank you so much. JoyPlease visit..Thanks! www.stores.ebay.com/rhapsodydesignjewelry or www.thehandcraftedjewelrymall.com/joykiefner/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2007 Report Share Posted October 16, 2007 Hi Joy, My story is pretty common in many ways. About 13 or 14 years ago I noticed I was sob. I was working full time and was pretty active but I noticed it was getting difficult to take those long walks, go out dancing, etc. I had read that sometimes women who had asthma as children and then outgrew it would be revisited by it during (peri) or menopause. Sounded good to me and since I didn't have a Dr. I bought an over the counter inhaler and moved on. I also thought it was just me getting older and not being in as good of shape. One night I met some friends for drinks and dinner and since I had 2 drinks I asked someone to take me home. The next morning I got up and decided it was so nice I would just walk (2.5 mi) to the restaurant and get the car. I was so sob, and weak and seriously afraid I wouldn't get there. I did and I immediately went to the nearest " doc in a box " . She said she didn't think it was asthma but there was some wheezing she thought it was bronchitis and gave me an antibiotic and prednisone. About a week into the prednisone I was feeling good! Those steps were " nothing " , I was thinking I was in " high cotton " . Then there was the pred taper and three weeks later I'm in the hospital with a fever and sats well below 90. My first dx was Legionnaire's disease, then pneumocystis, after 2 days I was sent to ICU. A new doctor had been called in, he suggested ARDS, prepared me for intubation and increased both prednisone and antibiotic. I started recovering within 24 hours without the vent, was kept there for another 2 days and then sent to a regular room. There was still no clear dx but heart failure was mentioned. I was there for 3 weeks, they wouldn't let me go until my sats were up and I could walk and still keep them up. I went home to my second floor apartment on oxygen. I struggled to keep working but I would have to stop half way down the stairs, going up or down, to rest. Three weeks later I was back to a new Dr.'s office, crackling, wheezing and very sob. She said off you go to the hospital. Different hospital, too. Lots more tests, cts, x-rays, pfts, bal and finally a vat. After 2 weeks I was able to go home, back on O2 and still no dx. I was referred to a pulmo, he actually took care of me in the hospital. After reviewing the results of the bal and vats he could find nothing, while the xray & ct showed the honeycombing the bal and vat did not show IPF or UIP as I think this specific is known as now. It did show an exposure to aspergillius but nothing was active. It was noted that the lung biopsy made have been taken from a place where the IPF wasn't active. From that point on the dx was HP. I was up and down on prednisone like a yo-yo. I was told that with HP once they found out what it was they could fix it. No one ever found out. My doc said the symptoms I was reporting were not consistent with the other tests. I'm still trying to keep my job but finally had to start the process for disability. This process from first hospital to HP dx took around a year. I decided it was time to see someone else. I got a referral to Virginal Mason and one of the top docs in the pulmonary dept. I went in told him my story and basically went through the same things, tests, everything but the vats. Up and down on pred, on and off O2. Finally he made the same statement about symptoms did not match tests results. I remember that day so well, I parked across the street in a parking garage, no handicapped placard. I could barely make it across the street. I rested once or twice against the building feeling like I was about to lose consciousness. Feeling embarrassed and ashamed. When I told him how difficult it was for me to walk over he sent me down for pft while exercising. I didn't make it 3 minutes before they dropped below 85. He was amazed, so then again we tested for other autoimmune diseases. He consulted with the whole pulmonary department, I met with different docs who had questions about environment and the most common agents that cause hp. One doctor said perhaps something had set off my immune system and even though I wasn't exposed to it now my body hadn't recognized that and the inflammation continued. This was year 2+. It was also the first time PF was uttered as well as chronic and progressive. Prednisone up and down, up and down. Tried Imuran, made me sick, discussed cytoxin but he felt I was too young that it can actually cause PF and cancer. By now I have gained a great deal of weight, 100 lbs, I am perimenopausal but the pred had an effect on my periods (doc said it was the first time he'd heard of that!), I couldn't sleep, emotional roller coaster, losing my hair, etc. I'm not getting better and it seems that I should look for someone closer to home. Somewhere in here I decided I better start my own research. The dx is now ILD w/secondary PF. Because of insurance I had to change docs. By now I just want somebody for " maintenance " . There is no more tissue left to test, and just about every test imaginable had been done. I found a local pulm and she had been my doc since then. She wasn't involved in the " what is it part? " but has certainly been the side effects doc. She got me to rehab and that started the weight loss plus she got the blood chemistry corrected, I needed potassium due to increased diuretics, found osteopenia start calcium w/D, blood sugar out of whack, test and treat for diabetes dependent on prednisone dosage, diagnose fibromyalgia off to Rheum doc, starts me on regular eye exams due to blurry vision caused by pred. Continues to work with me in finding a sleeping aid, sent me for sleep study, prescribed bi- pap. This took another year. Then she said it is time to go to UW and meet with Dr. Raghu. Dr. R prescribed NAC the first day. He then suggested the whole thing was caused by GERD/Reflux. Holy crap! All of this and the only thing wrong with me was heartburn? (oversimplification). Once that was eliminated I went back on Imuran, stuck with it for about 9 months but it made it sick and I decided that even if it was helping me I didn't want to live long feeling so bad. Then we tried cytoxin. Three weeks and I was still vomiting and developed a major uti. Back to Imuran, Dr. R says I need to try again and I do, same results. Then it is actimmune -interferon gamma 1b (I think that is right). Three times a week off I go for injections, my insurance will not cover if I self inject. Start on Tracleer for pulmonary hypertension. Start testing for tx. Through all this I am on and off oxygen, I see eye doc, urologist, gastroenterologist, neurologist, cardiologist, chiropractor, rheumy, bone doc, have monthly labs, pain meds. . After the tx testing I said ENOUGH. I say no to tx, I say no to many of the other drugs and refuse to take anything that makes me feel miserable for more than 90 days. I have a counselor/therapist I see once a month. I can tell her all things I can't share with my family. I don't feel bad if it makes her sad because I pay her to listen. It is a major relief for me. Within the last year or so Dr. R changed my dx to NSIP. I haven't asked why, I think it is due to my longevity. I'm not as curious about some things as I was in the beginning. In 2005 we again did some of the tx screening (I still didn't want one) and one of my tests showed positive myostitus (sp?) After discussing with both lung and rheumy docs I made the decision not to pursue further testing or treatment. Treatment would entail a large increase in prednisone and an additional autoimmune medication and now is not the time for me for either. This summer Dr. R told me I am deteriorating, based on pfts, 6 minute walk, etc. He again mentioned tx. In Dec. I will have eccho, ct and the usual pfts and then it may be time for another decision. Joy, this has been long and maybe more than you wanted to know. My dx for the most part has been ILD with fibrosing added to the beginning or the end. Dr. R says he doesn't know for sure what worked for me but something must have. Dr. R will answer your questions, he is always late btw, he is very positive when he talks to me so I make sure that I get a copy of his notes after my appointments. Right now I take pred, nac, nexxium, various pain medications and something for sleep/anxiety. I'm on 02 24/7, although I can sit quietly without it. I still drive but only in what my friends call " my magic circle " and that means close to home and not on freeways. I decided 12 years ago I was not going to live like a sick person (whatever that means) so I spend as little energy as I can on doctors, talking about my illness, even thinking about it. Great things have happened to me since that first hospital visit. This is not how I planned my life to end and I don't think it will for a while longer. Have you been asked about exposure to some of the more common causes of HP? What did they find in your biopsy besides HP? Any positive exposures? Have you lived and worked in the same place since before your diagnosis? Some things were ruled out for me because I had relocated several times. Has anyone come out and checked your home? I will pray for you, for wisdom, strength, healing, and peace. Kathie NSIP'95 PH > > Hi Kathie, my name is Joy (joynoel) and I live in Seattle. I am interested in your Hyper. Sensitivity Pneumonitis. I was diagnosed with fibrosis in 3/06. Not until a couple months ago, after the open lung biopsy, did we know I have HP. So, the doc says I live longer than with IPF. I see Dr. Raghu at UofW end of Dec. I wanted a second opinion. > So, what can you tell me about your diagnosis and subsequent health from it. Thank you so much. Joy > > > Please visit..Thanks! > www.stores.ebay.com/rhapsodydesignjewelry or > www.thehandcraftedjewelrymall.com/joykiefner/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2007 Report Share Posted October 16, 2007 Hi Joy, My story is pretty common in many ways. About 13 or 14 years ago I noticed I was sob. I was working full time and was pretty active but I noticed it was getting difficult to take those long walks, go out dancing, etc. I had read that sometimes women who had asthma as children and then outgrew it would be revisited by it during (peri) or menopause. Sounded good to me and since I didn't have a Dr. I bought an over the counter inhaler and moved on. I also thought it was just me getting older and not being in as good of shape. One night I met some friends for drinks and dinner and since I had 2 drinks I asked someone to take me home. The next morning I got up and decided it was so nice I would just walk (2.5 mi) to the restaurant and get the car. I was so sob, and weak and seriously afraid I wouldn't get there. I did and I immediately went to the nearest " doc in a box " . She said she didn't think it was asthma but there was some wheezing she thought it was bronchitis and gave me an antibiotic and prednisone. About a week into the prednisone I was feeling good! Those steps were " nothing " , I was thinking I was in " high cotton " . Then there was the pred taper and three weeks later I'm in the hospital with a fever and sats well below 90. My first dx was Legionnaire's disease, then pneumocystis, after 2 days I was sent to ICU. A new doctor had been called in, he suggested ARDS, prepared me for intubation and increased both prednisone and antibiotic. I started recovering within 24 hours without the vent, was kept there for another 2 days and then sent to a regular room. There was still no clear dx but heart failure was mentioned. I was there for 3 weeks, they wouldn't let me go until my sats were up and I could walk and still keep them up. I went home to my second floor apartment on oxygen. I struggled to keep working but I would have to stop half way down the stairs, going up or down, to rest. Three weeks later I was back to a new Dr.'s office, crackling, wheezing and very sob. She said off you go to the hospital. Different hospital, too. Lots more tests, cts, x-rays, pfts, bal and finally a vat. After 2 weeks I was able to go home, back on O2 and still no dx. I was referred to a pulmo, he actually took care of me in the hospital. After reviewing the results of the bal and vats he could find nothing, while the xray & ct showed the honeycombing the bal and vat did not show IPF or UIP as I think this specific is known as now. It did show an exposure to aspergillius but nothing was active. It was noted that the lung biopsy made have been taken from a place where the IPF wasn't active. From that point on the dx was HP. I was up and down on prednisone like a yo-yo. I was told that with HP once they found out what it was they could fix it. No one ever found out. My doc said the symptoms I was reporting were not consistent with the other tests. I'm still trying to keep my job but finally had to start the process for disability. This process from first hospital to HP dx took around a year. I decided it was time to see someone else. I got a referral to Virginal Mason and one of the top docs in the pulmonary dept. I went in told him my story and basically went through the same things, tests, everything but the vats. Up and down on pred, on and off O2. Finally he made the same statement about symptoms did not match tests results. I remember that day so well, I parked across the street in a parking garage, no handicapped placard. I could barely make it across the street. I rested once or twice against the building feeling like I was about to lose consciousness. Feeling embarrassed and ashamed. When I told him how difficult it was for me to walk over he sent me down for pft while exercising. I didn't make it 3 minutes before they dropped below 85. He was amazed, so then again we tested for other autoimmune diseases. He consulted with the whole pulmonary department, I met with different docs who had questions about environment and the most common agents that cause hp. One doctor said perhaps something had set off my immune system and even though I wasn't exposed to it now my body hadn't recognized that and the inflammation continued. This was year 2+. It was also the first time PF was uttered as well as chronic and progressive. Prednisone up and down, up and down. Tried Imuran, made me sick, discussed cytoxin but he felt I was too young that it can actually cause PF and cancer. By now I have gained a great deal of weight, 100 lbs, I am perimenopausal but the pred had an effect on my periods (doc said it was the first time he'd heard of that!), I couldn't sleep, emotional roller coaster, losing my hair, etc. I'm not getting better and it seems that I should look for someone closer to home. Somewhere in here I decided I better start my own research. The dx is now ILD w/secondary PF. Because of insurance I had to change docs. By now I just want somebody for " maintenance " . There is no more tissue left to test, and just about every test imaginable had been done. I found a local pulm and she had been my doc since then. She wasn't involved in the " what is it part? " but has certainly been the side effects doc. She got me to rehab and that started the weight loss plus she got the blood chemistry corrected, I needed potassium due to increased diuretics, found osteopenia start calcium w/D, blood sugar out of whack, test and treat for diabetes dependent on prednisone dosage, diagnose fibromyalgia off to Rheum doc, starts me on regular eye exams due to blurry vision caused by pred. Continues to work with me in finding a sleeping aid, sent me for sleep study, prescribed bi- pap. This took another year. Then she said it is time to go to UW and meet with Dr. Raghu. Dr. R prescribed NAC the first day. He then suggested the whole thing was caused by GERD/Reflux. Holy crap! All of this and the only thing wrong with me was heartburn? (oversimplification). Once that was eliminated I went back on Imuran, stuck with it for about 9 months but it made it sick and I decided that even if it was helping me I didn't want to live long feeling so bad. Then we tried cytoxin. Three weeks and I was still vomiting and developed a major uti. Back to Imuran, Dr. R says I need to try again and I do, same results. Then it is actimmune -interferon gamma 1b (I think that is right). Three times a week off I go for injections, my insurance will not cover if I self inject. Start on Tracleer for pulmonary hypertension. Start testing for tx. Through all this I am on and off oxygen, I see eye doc, urologist, gastroenterologist, neurologist, cardiologist, chiropractor, rheumy, bone doc, have monthly labs, pain meds. . After the tx testing I said ENOUGH. I say no to tx, I say no to many of the other drugs and refuse to take anything that makes me feel miserable for more than 90 days. I have a counselor/therapist I see once a month. I can tell her all things I can't share with my family. I don't feel bad if it makes her sad because I pay her to listen. It is a major relief for me. Within the last year or so Dr. R changed my dx to NSIP. I haven't asked why, I think it is due to my longevity. I'm not as curious about some things as I was in the beginning. In 2005 we again did some of the tx screening (I still didn't want one) and one of my tests showed positive myostitus (sp?) After discussing with both lung and rheumy docs I made the decision not to pursue further testing or treatment. Treatment would entail a large increase in prednisone and an additional autoimmune medication and now is not the time for me for either. This summer Dr. R told me I am deteriorating, based on pfts, 6 minute walk, etc. He again mentioned tx. In Dec. I will have eccho, ct and the usual pfts and then it may be time for another decision. Joy, this has been long and maybe more than you wanted to know. My dx for the most part has been ILD with fibrosing added to the beginning or the end. Dr. R says he doesn't know for sure what worked for me but something must have. Dr. R will answer your questions, he is always late btw, he is very positive when he talks to me so I make sure that I get a copy of his notes after my appointments. Right now I take pred, nac, nexxium, various pain medications and something for sleep/anxiety. I'm on 02 24/7, although I can sit quietly without it. I still drive but only in what my friends call " my magic circle " and that means close to home and not on freeways. I decided 12 years ago I was not going to live like a sick person (whatever that means) so I spend as little energy as I can on doctors, talking about my illness, even thinking about it. Great things have happened to me since that first hospital visit. This is not how I planned my life to end and I don't think it will for a while longer. Have you been asked about exposure to some of the more common causes of HP? What did they find in your biopsy besides HP? Any positive exposures? Have you lived and worked in the same place since before your diagnosis? Some things were ruled out for me because I had relocated several times. Has anyone come out and checked your home? I will pray for you, for wisdom, strength, healing, and peace. Kathie NSIP'95 PH > > Hi Kathie, my name is Joy (joynoel) and I live in Seattle. I am interested in your Hyper. Sensitivity Pneumonitis. I was diagnosed with fibrosis in 3/06. Not until a couple months ago, after the open lung biopsy, did we know I have HP. So, the doc says I live longer than with IPF. I see Dr. Raghu at UofW end of Dec. I wanted a second opinion. > So, what can you tell me about your diagnosis and subsequent health from it. Thank you so much. Joy > > > Please visit..Thanks! > www.stores.ebay.com/rhapsodydesignjewelry or > www.thehandcraftedjewelrymall.com/joykiefner/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2007 Report Share Posted October 16, 2007 Hi Joy, My story is pretty common in many ways. About 13 or 14 years ago I noticed I was sob. I was working full time and was pretty active but I noticed it was getting difficult to take those long walks, go out dancing, etc. I had read that sometimes women who had asthma as children and then outgrew it would be revisited by it during (peri) or menopause. Sounded good to me and since I didn't have a Dr. I bought an over the counter inhaler and moved on. I also thought it was just me getting older and not being in as good of shape. One night I met some friends for drinks and dinner and since I had 2 drinks I asked someone to take me home. The next morning I got up and decided it was so nice I would just walk (2.5 mi) to the restaurant and get the car. I was so sob, and weak and seriously afraid I wouldn't get there. I did and I immediately went to the nearest " doc in a box " . She said she didn't think it was asthma but there was some wheezing she thought it was bronchitis and gave me an antibiotic and prednisone. About a week into the prednisone I was feeling good! Those steps were " nothing " , I was thinking I was in " high cotton " . Then there was the pred taper and three weeks later I'm in the hospital with a fever and sats well below 90. My first dx was Legionnaire's disease, then pneumocystis, after 2 days I was sent to ICU. A new doctor had been called in, he suggested ARDS, prepared me for intubation and increased both prednisone and antibiotic. I started recovering within 24 hours without the vent, was kept there for another 2 days and then sent to a regular room. There was still no clear dx but heart failure was mentioned. I was there for 3 weeks, they wouldn't let me go until my sats were up and I could walk and still keep them up. I went home to my second floor apartment on oxygen. I struggled to keep working but I would have to stop half way down the stairs, going up or down, to rest. Three weeks later I was back to a new Dr.'s office, crackling, wheezing and very sob. She said off you go to the hospital. Different hospital, too. Lots more tests, cts, x-rays, pfts, bal and finally a vat. After 2 weeks I was able to go home, back on O2 and still no dx. I was referred to a pulmo, he actually took care of me in the hospital. After reviewing the results of the bal and vats he could find nothing, while the xray & ct showed the honeycombing the bal and vat did not show IPF or UIP as I think this specific is known as now. It did show an exposure to aspergillius but nothing was active. It was noted that the lung biopsy made have been taken from a place where the IPF wasn't active. From that point on the dx was HP. I was up and down on prednisone like a yo-yo. I was told that with HP once they found out what it was they could fix it. No one ever found out. My doc said the symptoms I was reporting were not consistent with the other tests. I'm still trying to keep my job but finally had to start the process for disability. This process from first hospital to HP dx took around a year. I decided it was time to see someone else. I got a referral to Virginal Mason and one of the top docs in the pulmonary dept. I went in told him my story and basically went through the same things, tests, everything but the vats. Up and down on pred, on and off O2. Finally he made the same statement about symptoms did not match tests results. I remember that day so well, I parked across the street in a parking garage, no handicapped placard. I could barely make it across the street. I rested once or twice against the building feeling like I was about to lose consciousness. Feeling embarrassed and ashamed. When I told him how difficult it was for me to walk over he sent me down for pft while exercising. I didn't make it 3 minutes before they dropped below 85. He was amazed, so then again we tested for other autoimmune diseases. He consulted with the whole pulmonary department, I met with different docs who had questions about environment and the most common agents that cause hp. One doctor said perhaps something had set off my immune system and even though I wasn't exposed to it now my body hadn't recognized that and the inflammation continued. This was year 2+. It was also the first time PF was uttered as well as chronic and progressive. Prednisone up and down, up and down. Tried Imuran, made me sick, discussed cytoxin but he felt I was too young that it can actually cause PF and cancer. By now I have gained a great deal of weight, 100 lbs, I am perimenopausal but the pred had an effect on my periods (doc said it was the first time he'd heard of that!), I couldn't sleep, emotional roller coaster, losing my hair, etc. I'm not getting better and it seems that I should look for someone closer to home. Somewhere in here I decided I better start my own research. The dx is now ILD w/secondary PF. Because of insurance I had to change docs. By now I just want somebody for " maintenance " . There is no more tissue left to test, and just about every test imaginable had been done. I found a local pulm and she had been my doc since then. She wasn't involved in the " what is it part? " but has certainly been the side effects doc. She got me to rehab and that started the weight loss plus she got the blood chemistry corrected, I needed potassium due to increased diuretics, found osteopenia start calcium w/D, blood sugar out of whack, test and treat for diabetes dependent on prednisone dosage, diagnose fibromyalgia off to Rheum doc, starts me on regular eye exams due to blurry vision caused by pred. Continues to work with me in finding a sleeping aid, sent me for sleep study, prescribed bi- pap. This took another year. Then she said it is time to go to UW and meet with Dr. Raghu. Dr. R prescribed NAC the first day. He then suggested the whole thing was caused by GERD/Reflux. Holy crap! All of this and the only thing wrong with me was heartburn? (oversimplification). Once that was eliminated I went back on Imuran, stuck with it for about 9 months but it made it sick and I decided that even if it was helping me I didn't want to live long feeling so bad. Then we tried cytoxin. Three weeks and I was still vomiting and developed a major uti. Back to Imuran, Dr. R says I need to try again and I do, same results. Then it is actimmune -interferon gamma 1b (I think that is right). Three times a week off I go for injections, my insurance will not cover if I self inject. Start on Tracleer for pulmonary hypertension. Start testing for tx. Through all this I am on and off oxygen, I see eye doc, urologist, gastroenterologist, neurologist, cardiologist, chiropractor, rheumy, bone doc, have monthly labs, pain meds. . After the tx testing I said ENOUGH. I say no to tx, I say no to many of the other drugs and refuse to take anything that makes me feel miserable for more than 90 days. I have a counselor/therapist I see once a month. I can tell her all things I can't share with my family. I don't feel bad if it makes her sad because I pay her to listen. It is a major relief for me. Within the last year or so Dr. R changed my dx to NSIP. I haven't asked why, I think it is due to my longevity. I'm not as curious about some things as I was in the beginning. In 2005 we again did some of the tx screening (I still didn't want one) and one of my tests showed positive myostitus (sp?) After discussing with both lung and rheumy docs I made the decision not to pursue further testing or treatment. Treatment would entail a large increase in prednisone and an additional autoimmune medication and now is not the time for me for either. This summer Dr. R told me I am deteriorating, based on pfts, 6 minute walk, etc. He again mentioned tx. In Dec. I will have eccho, ct and the usual pfts and then it may be time for another decision. Joy, this has been long and maybe more than you wanted to know. My dx for the most part has been ILD with fibrosing added to the beginning or the end. Dr. R says he doesn't know for sure what worked for me but something must have. Dr. R will answer your questions, he is always late btw, he is very positive when he talks to me so I make sure that I get a copy of his notes after my appointments. Right now I take pred, nac, nexxium, various pain medications and something for sleep/anxiety. I'm on 02 24/7, although I can sit quietly without it. I still drive but only in what my friends call " my magic circle " and that means close to home and not on freeways. I decided 12 years ago I was not going to live like a sick person (whatever that means) so I spend as little energy as I can on doctors, talking about my illness, even thinking about it. Great things have happened to me since that first hospital visit. This is not how I planned my life to end and I don't think it will for a while longer. Have you been asked about exposure to some of the more common causes of HP? What did they find in your biopsy besides HP? Any positive exposures? Have you lived and worked in the same place since before your diagnosis? Some things were ruled out for me because I had relocated several times. Has anyone come out and checked your home? I will pray for you, for wisdom, strength, healing and peace. Kathie NSIP'95 PH > > Hi Kathie, my name is Joy (joynoel) and I live in Seattle. I am interested in your Hyper. Sensitivity Pneumonitis. I was diagnosed with fibrosis in 3/06. Not until a couple months ago, after the open lung biopsy, did we know I have HP. So, the doc says I live longer than with IPF. I see Dr. Raghu at UofW end of Dec. I wanted a second opinion. > So, what can you tell me about your diagnosis and subsequent health from it. Thank you so much. Joy > > > Please visit..Thanks! > www.stores.ebay.com/rhapsodydesignjewelry or > www.thehandcraftedjewelrymall.com/joykiefner/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2007 Report Share Posted October 16, 2007 Kathie, I hope you won't mind....what problems did you have with Imuran? I have been taking prednisone and Imuran for 26 months. The miserable side-effects are from the prednisone. Hopefully the imuran dose 100mg wii decrease soon. Z fibriotic NSIP/05 Z fibriotic NSIP/o5/PA Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marley Kathie wrote: Hi Joy, My story is pretty common in many ways. About 13 or 14 years ago I noticed I was sob. I was working full time and was pretty active but I noticed it was getting difficult to take those long walks, go out dancing, etc. I had read that sometimes women who had asthma as children and then outgrew it would be revisited by it during (peri) or menopause. Sounded good to me and since I didn't have a Dr. I bought an over the counter inhaler and moved on. I also thought it was just me getting older and not being in as good of shape. One night I met some friends for drinks and dinner and since I had 2 drinks I asked someone to take me home. The next morning I got up and decided it was so nice I would just walk (2.5 mi) to the restaurant and get the car. I was so sob, and weak and seriously afraid I wouldn't get there. I did and I immediately went to the nearest "doc in a box". She said she didn't think it was asthma but there was some wheezing she thought it was bronchitis and gave me an antibiotic and prednisone. About a week into the prednisone I was feeling good! Those steps were "nothing", I was thinking I was in "high cotton". Then there was the pred taper and three weeks later I'm in the hospital with a fever and sats well below 90. My first dx was Legionnaire's disease, then pneumocystis, after 2 days I was sent to ICU. A new doctor had been called in, he suggested ARDS, prepared me for intubation and increased both prednisone and antibiotic. I started recovering within 24 hours without the vent, was kept there for another 2 days and then sent to a regular room. There was still no clear dx but heart failure was mentioned. I was there for 3 weeks, they wouldn't let me go until my sats were up and I could walk and still keep them up. I went home to my second floor apartment on oxygen. I struggled to keep working but I would have to stop half way down the stairs, going up or down, to rest. Three weeks later I was back to a new Dr.'s office, crackling, wheezing and very sob. She said off you go to the hospital. Different hospital, too. Lots more tests, cts, x-rays, pfts, bal and finally a vat. After 2 weeks I was able to go home, back on O2 and still no dx. I was referred to a pulmo, he actually took care of me in the hospital. After reviewing the results of the bal and vats he could find nothing, while the xray & ct showed the honeycombing the bal and vat did not show IPF or UIP as I think this specific is known as now. It did show an exposure to aspergillius but nothing was active. It was noted that the lung biopsy made have been taken from a place where the IPF wasn't active. >From that point on the dx was HP. I was up and down on prednisone like a yo-yo. I was told that with HP once they found out what it was they could fix it. No one ever found out. My doc said the symptoms I was reporting were not consistent with the other tests. I'm still trying to keep my job but finally had to start the process for disability. This process from first hospital to HP dx took around a year. I decided it was time to see someone else. I got a referral to Virginal Mason and one of the top docs in the pulmonary dept. I went in told him my story and basically went through the same things, tests, everything but the vats. Up and down on pred, on and off O2. Finally he made the same statement about symptoms did not match tests results. I remember that day so well, I parked across the street in a parking garage, no handicapped placard. I could barely make it across the street. I rested once or twice against the building feeling like I was about to lose consciousness. Feeling embarrassed and ashamed. When I told him how difficult it was for me to walk over he sent me down for pft while exercising. I didn't make it 3 minutes before they dropped below 85. He was amazed, so then again we tested for other autoimmune diseases. He consulted with the whole pulmonary department, I met with different docs who had questions about environment and the most common agents that cause hp. One doctor said perhaps something had set off my immune system and even though I wasn't exposed to it now my body hadn't recognized that and the inflammation continued. This was year 2+. It was also the first time PF was uttered as well as chronic and progressive. Prednisone up and down, up and down. Tried Imuran, made me sick, discussed cytoxin but he felt I was too young that it can actually cause PF and cancer. By now I have gained a great deal of weight, 100 lbs, I am perimenopausal but the pred had an effect on my periods (doc said it was the first time he'd heard of that!), I couldn't sleep, emotional roller coaster, losing my hair, etc. I'm not getting better and it seems that I should look for someone closer to home. Somewhere in here I decided I better start my own research. The dx is now ILD w/secondary PF. Because of insurance I had to change docs. By now I just want somebody for "maintenance". There is no more tissue left to test, and just about every test imaginable had been done. I found a local pulm and she had been my doc since then. She wasn't involved in the "what is it part?" but has certainly been the side effects doc. She got me to rehab and that started the weight loss plus she got the blood chemistry corrected, I needed potassium due to increased diuretics, found osteopenia start calcium w/D, blood sugar out of whack, test and treat for diabetes dependent on prednisone dosage, diagnose fibromyalgia off to Rheum doc, starts me on regular eye exams due to blurry vision caused by pred. Continues to work with me in finding a sleeping aid, sent me for sleep study, prescribed bi- pap. This took another year. Then she said it is time to go to UW and meet with Dr. Raghu. Dr. R prescribed NAC the first day. He then suggested the whole thing was caused by GERD/Reflux. Holy crap! All of this and the only thing wrong with me was heartburn? (oversimplification). Once that was eliminated I went back on Imuran, stuck with it for about 9 months but it made it sick and I decided that even if it was helping me I didn't want to live long feeling so bad. Then we tried cytoxin. Three weeks and I was still vomiting and developed a major uti. Back to Imuran, Dr. R says I need to try again and I do, same results. Then it is actimmune -interferon gamma 1b (I think that is right). Three times a week off I go for injections, my insurance will not cover if I self inject. Start on Tracleer for pulmonary hypertension. Start testing for tx. Through all this I am on and off oxygen, I see eye doc, urologist, gastroenterologist, neurologist, cardiologist, chiropractor, rheumy, bone doc, have monthly labs, pain meds. . After the tx testing I said ENOUGH. I say no to tx, I say no to many of the other drugs and refuse to take anything that makes me feel miserable for more than 90 days. I have a counselor/therapist I see once a month. I can tell her all things I can't share with my family. I don't feel bad if it makes her sad because I pay her to listen. It is a major relief for me. Within the last year or so Dr. R changed my dx to NSIP. I haven't asked why, I think it is due to my longevity. I'm not as curious about some things as I was in the beginning. In 2005 we again did some of the tx screening (I still didn't want one) and one of my tests showed positive myostitus (sp?) After discussing with both lung and rheumy docs I made the decision not to pursue further testing or treatment. Treatment would entail a large increase in prednisone and an additional autoimmune medication and now is not the time for me for either. This summer Dr. R told me I am deteriorating, based on pfts, 6 minute walk, etc. He again mentioned tx. In Dec. I will have eccho, ct and the usual pfts and then it may be time for another decision. Joy, this has been long and maybe more than you wanted to know. My dx for the most part has been ILD with fibrosing added to the beginning or the end. Dr. R says he doesn't know for sure what worked for me but something must have. Dr. R will answer your questions, he is always late btw, he is very positive when he talks to me so I make sure that I get a copy of his notes after my appointments. Right now I take pred, nac, nexxium, various pain medications and something for sleep/anxiety. I'm on 02 24/7, although I can sit quietly without it. I still drive but only in what my friends call "my magic circle" and that means close to home and not on freeways. I decided 12 years ago I was not going to live like a sick person (whatever that means) so I spend as little energy as I can on doctors, talking about my illness, even thinking about it. Great things have happened to me since that first hospital visit. This is not how I planned my life to end and I don't think it will for a while longer. Have you been asked about exposure to some of the more common causes of HP? What did they find in your biopsy besides HP? Any positive exposures? Have you lived and worked in the same place since before your diagnosis? Some things were ruled out for me because I had relocated several times. Has anyone come out and checked your home? I will pray for you, for wisdom, strength, healing, and peace. Kathie NSIP'95 PH > > Hi Kathie, my name is Joy (joynoel) and I live in Seattle. I am interested in your Hyper. Sensitivity Pneumonitis. I was diagnosed with fibrosis in 3/06. Not until a couple months ago, after the open lung biopsy, did we know I have HP. So, the doc says I live longer than with IPF. I see Dr. Raghu at UofW end of Dec. I wanted a second opinion. > So, what can you tell me about your diagnosis and subsequent health from it. Thank you so much. Joy > > > Please visit..Thanks! > www.stores.ebay.com/rhapsodydesignjewelry or > www.thehandcraftedjewelrymall.com/joykiefner/ > No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.14.12/1073 - Release Date: 10/16/2007 8:22 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 , Kathie here. I have been on it twice for 6+months both times. I could never get past the gastrointestinal side effects, nausea, diarrhea, vomiting, and the exhaustion. Then there was the imbalance between red and white cells, every cut became infected, not to mention UTIs, sinus infections, I also developed gout somewhere along the line and I couldn't take the medication I needed because of drug interactions. We tried different dosages, different times of the day, etc. but I never could get up to the recommended dose where it might do some good. All of these symptoms left or improved greatly when I quit taking the Imuran. And I wasn't getting better (silly) and I wasn't stabilized, either. Maybe the Imuran wouldn't have bothered me without the prednisone but it wasn't an either or choice. I think I'm tough, but feeling that miserable day after day just wasn't the quality of life I wanted. Ask me anything, if I remember I will answer you! lol Blessings, Kathie NSIP '95, PH > > > > > > Hi Kathie, my name is Joy (joynoel) and I live in Seattle. I am > > interested in your Hyper. Sensitivity Pneumonitis. I was diagnosed > > with fibrosis in 3/06. Not until a couple months ago, after the open > > lung biopsy, did we know I have HP. So, the doc says I live longer > > than with IPF. I see Dr. Raghu at UofW end of Dec. I wanted a > > second opinion. > > > So, what can you tell me about your diagnosis and subsequent > > health from it. Thank you so much. Joy > > > > > > > > > Please visit..Thanks! > > > www.stores.ebay.com/rhapsodydesignjewelry or > > > www.thehandcraftedjewelrymall.com/joykiefner/ > > > > > > > > > > >------------------------------------------------------------------- ----- > > > >No virus found in this incoming message. > >Checked by AVG Free Edition. > >Version: 7.5.488 / Virus Database: 269.14.12/1073 - Release Date: 10/16/2007 8:22 AM > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 , Kathie here. I have been on it twice for 6+months both times. I could never get past the gastrointestinal side effects, nausea, diarrhea, vomiting, and the exhaustion. Then there was the imbalance between red and white cells, every cut became infected, not to mention UTIs, sinus infections, I also developed gout somewhere along the line and I couldn't take the medication I needed because of drug interactions. We tried different dosages, different times of the day, etc. but I never could get up to the recommended dose where it might do some good. All of these symptoms left or improved greatly when I quit taking the Imuran. And I wasn't getting better (silly) and I wasn't stabilized, either. Maybe the Imuran wouldn't have bothered me without the prednisone but it wasn't an either or choice. I think I'm tough, but feeling that miserable day after day just wasn't the quality of life I wanted. Ask me anything, if I remember I will answer you! lol Blessings, Kathie NSIP '95, PH > > > > > > Hi Kathie, my name is Joy (joynoel) and I live in Seattle. I am > > interested in your Hyper. Sensitivity Pneumonitis. I was diagnosed > > with fibrosis in 3/06. Not until a couple months ago, after the open > > lung biopsy, did we know I have HP. So, the doc says I live longer > > than with IPF. I see Dr. Raghu at UofW end of Dec. I wanted a > > second opinion. > > > So, what can you tell me about your diagnosis and subsequent > > health from it. Thank you so much. Joy > > > > > > > > > Please visit..Thanks! > > > www.stores.ebay.com/rhapsodydesignjewelry or > > > www.thehandcraftedjewelrymall.com/joykiefner/ > > > > > > > > > > >------------------------------------------------------------------- ----- > > > >No virus found in this incoming message. > >Checked by AVG Free Edition. > >Version: 7.5.488 / Virus Database: 269.14.12/1073 - Release Date: 10/16/2007 8:22 AM > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 , Kathie here. I have been on it twice for 6+months both times. I could never get past the gastrointestinal side effects, nausea, diarrhea, vomiting, and the exhaustion. Then there was the imbalance between red and white cells, every cut became infected, not to mention UTIs, sinus infections, I also developed gout somewhere along the line and I couldn't take the medication I needed because of drug interactions. We tried different dosages, different times of the day, etc. but I never could get up to the recommended dose where it might do some good. All of these symptoms left or improved greatly when I quit taking the Imuran. And I wasn't getting better (silly) and I wasn't stabilized, either. Maybe the Imuran wouldn't have bothered me without the prednisone but it wasn't an either or choice. I think I'm tough, but feeling that miserable day after day just wasn't the quality of life I wanted. Ask me anything, if I remember I will answer you! lol Blessings, Kathie NSIP '95, PH > > > > > > Hi Kathie, my name is Joy (joynoel) and I live in Seattle. I am > > interested in your Hyper. Sensitivity Pneumonitis. I was diagnosed > > with fibrosis in 3/06. Not until a couple months ago, after the open > > lung biopsy, did we know I have HP. So, the doc says I live longer > > than with IPF. I see Dr. Raghu at UofW end of Dec. I wanted a > > second opinion. > > > So, what can you tell me about your diagnosis and subsequent > > health from it. Thank you so much. Joy > > > > > > > > > Please visit..Thanks! > > > www.stores.ebay.com/rhapsodydesignjewelry or > > > www.thehandcraftedjewelrymall.com/joykiefner/ > > > > > > > > > > >------------------------------------------------------------------- ----- > > > >No virus found in this incoming message. > >Checked by AVG Free Edition. > >Version: 7.5.488 / Virus Database: 269.14.12/1073 - Release Date: 10/16/2007 8:22 AM > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 Kathie, I'm very interested in your response. I've always been on both the Prednisone and Imuran at the same time...I also take Mepron( that's an anti-bacterial medication to help ward off the infections that might show up due to both of the the immuno-suppressants). I have had more UTI's than usual ( that's before being dx'd)I've had IBS for 20 years...it's usually under cntrol with fiber and activity but it has acted up more since this mess began. I have the white/red blood cell issue to some degree but the doc's aren't concerned at this time. I wonder if the Imuran has caused the increased incidents of UTI's and IBS. I've been stable since dx...8/05...the PFT's are the same, the HRCT are too. I'm stronger and have felt better than 2 years ago. Exhaustion is just part of my life . We've decided that I'm maybe 50% better than back in 2005. I'm on O2 24/7..., I've retired from teaching, I can do far less and am very aware of my lower energy level. However...the NSIP is still stable...there has been no more fibrosis or honeycombing...the velcro noise is gone and I'm SOB less often and the cough is only really bothersome when I've over-done or over-talked!!!! So, I'll keep the medications as they are...the Prednisone has gone from 40mg to 12.5mg and hopefully it will be lowered again in November. The imuran dose is supposed to be lowered too.I do hate taking all the medications...the water alone to get all the pills down in the morning...keeps me home for hours!!!!! Sorry...that was TMI! Z fibriotic NSIP/05 Z fibriotic NSIP/o5/PA Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marley Kathie wrote: , Kathie here. I have been on it twice for 6+months both times. I could never get past the gastrointestinal side effects, nausea, diarrhea, vomiting, and the exhaustion. Then there was the imbalance between red and white cells, every cut became infected, not to mention UTIs, sinus infections, I also developed gout somewhere along the line and I couldn't take the medication I needed because of drug interactions. We tried different dosages, different times of the day, etc. but I never could get up to the recommended dose where it might do some good. All of these symptoms left or improved greatly when I quit taking the Imuran. And I wasn't getting better (silly) and I wasn't stabilized, either. Maybe the Imuran wouldn't have bothered me without the prednisone but it wasn't an either or choice. I think I'm tough, but feeling that miserable day after day just wasn't the quality of life I wanted. Ask me anything, if I remember I will answer you! lol Blessings, Kathie NSIP '95, PH > > > > > > Hi Kathie, my name is Joy (joynoel) and I live in Seattle. I am > > interested in your Hyper. Sensitivity Pneumonitis. I was diagnosed > > with fibrosis in 3/06. Not until a couple months ago, after the open > > lung biopsy, did we know I have HP. So, the doc says I live longer > > than with IPF. I see Dr. Raghu at UofW end of Dec. I wanted a > > second opinion. > > > So, what can you tell me about your diagnosis and subsequent > > health from it. Thank you so much. Joy > > > > > > > > > Please visit..Thanks! > > > www.stores.ebay.com/rhapsodydesignjewelry or > > > www.thehandcraftedjewelrymall.com/joykiefner/ > > > > > > > > > > >---------------------------------------------------------- ----- > > > >No virus found in this incoming message. > >Checked by AVG Free Edition. > >Version: 7.5.488 / Virus Database: 269.14.12/1073 - Release Date: 10/16/2007 8:22 AM > > > > > No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.15.0/1077 - Release Date: 10/18/2007 9:54 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 Kathie, I'm very interested in your response. I've always been on both the Prednisone and Imuran at the same time...I also take Mepron( that's an anti-bacterial medication to help ward off the infections that might show up due to both of the the immuno-suppressants). I have had more UTI's than usual ( that's before being dx'd)I've had IBS for 20 years...it's usually under cntrol with fiber and activity but it has acted up more since this mess began. I have the white/red blood cell issue to some degree but the doc's aren't concerned at this time. I wonder if the Imuran has caused the increased incidents of UTI's and IBS. I've been stable since dx...8/05...the PFT's are the same, the HRCT are too. I'm stronger and have felt better than 2 years ago. Exhaustion is just part of my life . We've decided that I'm maybe 50% better than back in 2005. I'm on O2 24/7..., I've retired from teaching, I can do far less and am very aware of my lower energy level. However...the NSIP is still stable...there has been no more fibrosis or honeycombing...the velcro noise is gone and I'm SOB less often and the cough is only really bothersome when I've over-done or over-talked!!!! So, I'll keep the medications as they are...the Prednisone has gone from 40mg to 12.5mg and hopefully it will be lowered again in November. The imuran dose is supposed to be lowered too.I do hate taking all the medications...the water alone to get all the pills down in the morning...keeps me home for hours!!!!! Sorry...that was TMI! Z fibriotic NSIP/05 Z fibriotic NSIP/o5/PA Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marley Kathie wrote: , Kathie here. I have been on it twice for 6+months both times. I could never get past the gastrointestinal side effects, nausea, diarrhea, vomiting, and the exhaustion. Then there was the imbalance between red and white cells, every cut became infected, not to mention UTIs, sinus infections, I also developed gout somewhere along the line and I couldn't take the medication I needed because of drug interactions. We tried different dosages, different times of the day, etc. but I never could get up to the recommended dose where it might do some good. All of these symptoms left or improved greatly when I quit taking the Imuran. And I wasn't getting better (silly) and I wasn't stabilized, either. Maybe the Imuran wouldn't have bothered me without the prednisone but it wasn't an either or choice. I think I'm tough, but feeling that miserable day after day just wasn't the quality of life I wanted. Ask me anything, if I remember I will answer you! lol Blessings, Kathie NSIP '95, PH > > > > > > Hi Kathie, my name is Joy (joynoel) and I live in Seattle. I am > > interested in your Hyper. Sensitivity Pneumonitis. I was diagnosed > > with fibrosis in 3/06. Not until a couple months ago, after the open > > lung biopsy, did we know I have HP. So, the doc says I live longer > > than with IPF. I see Dr. Raghu at UofW end of Dec. I wanted a > > second opinion. > > > So, what can you tell me about your diagnosis and subsequent > > health from it. Thank you so much. Joy > > > > > > > > > Please visit..Thanks! > > > www.stores.ebay.com/rhapsodydesignjewelry or > > > www.thehandcraftedjewelrymall.com/joykiefner/ > > > > > > > > > > >---------------------------------------------------------- ----- > > > >No virus found in this incoming message. > >Checked by AVG Free Edition. > >Version: 7.5.488 / Virus Database: 269.14.12/1073 - Release Date: 10/16/2007 8:22 AM > > > > > No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.15.0/1077 - Release Date: 10/18/2007 9:54 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 Kathie, I'm very interested in your response. I've always been on both the Prednisone and Imuran at the same time...I also take Mepron( that's an anti-bacterial medication to help ward off the infections that might show up due to both of the the immuno-suppressants). I have had more UTI's than usual ( that's before being dx'd)I've had IBS for 20 years...it's usually under cntrol with fiber and activity but it has acted up more since this mess began. I have the white/red blood cell issue to some degree but the doc's aren't concerned at this time. I wonder if the Imuran has caused the increased incidents of UTI's and IBS. I've been stable since dx...8/05...the PFT's are the same, the HRCT are too. I'm stronger and have felt better than 2 years ago. Exhaustion is just part of my life . We've decided that I'm maybe 50% better than back in 2005. I'm on O2 24/7..., I've retired from teaching, I can do far less and am very aware of my lower energy level. However...the NSIP is still stable...there has been no more fibrosis or honeycombing...the velcro noise is gone and I'm SOB less often and the cough is only really bothersome when I've over-done or over-talked!!!! So, I'll keep the medications as they are...the Prednisone has gone from 40mg to 12.5mg and hopefully it will be lowered again in November. The imuran dose is supposed to be lowered too.I do hate taking all the medications...the water alone to get all the pills down in the morning...keeps me home for hours!!!!! Sorry...that was TMI! Z fibriotic NSIP/05 Z fibriotic NSIP/o5/PA Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marley Kathie wrote: , Kathie here. I have been on it twice for 6+months both times. I could never get past the gastrointestinal side effects, nausea, diarrhea, vomiting, and the exhaustion. Then there was the imbalance between red and white cells, every cut became infected, not to mention UTIs, sinus infections, I also developed gout somewhere along the line and I couldn't take the medication I needed because of drug interactions. We tried different dosages, different times of the day, etc. but I never could get up to the recommended dose where it might do some good. All of these symptoms left or improved greatly when I quit taking the Imuran. And I wasn't getting better (silly) and I wasn't stabilized, either. Maybe the Imuran wouldn't have bothered me without the prednisone but it wasn't an either or choice. I think I'm tough, but feeling that miserable day after day just wasn't the quality of life I wanted. Ask me anything, if I remember I will answer you! lol Blessings, Kathie NSIP '95, PH > > > > > > Hi Kathie, my name is Joy (joynoel) and I live in Seattle. I am > > interested in your Hyper. Sensitivity Pneumonitis. I was diagnosed > > with fibrosis in 3/06. Not until a couple months ago, after the open > > lung biopsy, did we know I have HP. So, the doc says I live longer > > than with IPF. I see Dr. Raghu at UofW end of Dec. I wanted a > > second opinion. > > > So, what can you tell me about your diagnosis and subsequent > > health from it. Thank you so much. Joy > > > > > > > > > Please visit..Thanks! > > > www.stores.ebay.com/rhapsodydesignjewelry or > > > www.thehandcraftedjewelrymall.com/joykiefner/ > > > > > > > > > > >---------------------------------------------------------- ----- > > > >No virus found in this incoming message. > >Checked by AVG Free Edition. > >Version: 7.5.488 / Virus Database: 269.14.12/1073 - Release Date: 10/16/2007 8:22 AM > > > > > No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.15.0/1077 - Release Date: 10/18/2007 9:54 AM Quote Link to comment Share on other sites More sharing options...
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