Guest guest Posted September 28, 2008 Report Share Posted September 28, 2008 Hi to all. I have been a member for several weeks now reading post after post. By reading everyone else's posts it has belped me greatly with my own struggles. I felt like I should introduce myself as you have all been such a positive part of my life in the recent weeks. My name is . I'm a 33 yr old female in FL with IPF/ILD. Officially diagnosed Jan. 2006. I have lived with symptoms of the disease for as long as I remember and was mis-diagnosed with exercise induced asthma at age 9. I didn't find out I had a restricve lung disease until I was 21 yrs old and 5 months pregnant. After many years, many doctors and a move from GA to FL we were blessed to find the right doctor and a definite diagnosis. Although I had a few years of my IPF staying stable, it has taken a turn for the worse over the past 3 years. I now have 43% Vital Lung Capacity and my difussion capacity has wiggled between 16% and 48% recently. We have tried Prednison and Cellcept unsuccesfully as I experienced progression of scarring, a drop in diffusion, and excessive weight gain. Both drugs were completely ceased in April this year. I have managed to lose 30 lbs and have 15 more to go before I can start the work up in hopes to be placed on the transplant list at Mayo/Jax. Since July I've had 3 bouts of bronchitis & antibiotics. Last Wednesday I had another brochoscopy and am waiting for the results. Thank you all for the support you have already given. I look forward to doing the same you. Many Thanks, /FL IPF/ILD 06 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2008 Report Share Posted September 28, 2008 Hi , Welcome to Breathe-Support! I'm so glad you decided to post and I'm happy to know that you've found reading previous posts helpful. There is so much collective knowledge, practical experience and wisdom in this group it never ceases to amaze me. I'm curious...do the doctors feel you've had restrictive lung disease since you were a child? You are so young to have to deal with this and yet it sounds as if you've been dealing with it for many many years already. Of course I feel that I'm to young for this nonsense and I'm 49. I hope they can get the repeated bronchits under control for your sake, it's no fun. I just had a mild bout of it myself and finish up my Levaquin tomorrow. Once again, welcome to the board. We have other members around your age and then members all the way up into their 80's. We run the entire spectrum here and I hope you find the support and friendship here that I have! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 New Memeber Hi to all. I have been a member for several weeks now reading post after post. By reading everyone else's posts it has belped me greatly with my own struggles. I felt like I should introduce myself as you have all been such a positive part of my life in the recent weeks.My name is . I'm a 33 yr old female in FL with IPF/ILD. Officially diagnosed Jan. 2006. I have lived with symptoms of the disease for as long as I remember and was mis-diagnosed with exercise induced asthma at age 9. I didn't find out I had a restricve lung disease until I was 21 yrs old and 5 months pregnant. After many years, many doctors and a move from GA to FL we were blessed to find the right doctor and a definite diagnosis. Although I had a few years of my IPF staying stable, it has taken a turn for the worse over the past 3 years. I now have 43% Vital Lung Capacity and my difussion capacity has wiggled between 16% and 48% recently. We have tried Prednison and Cellcept unsuccesfully as I experienced progression of scarring, a drop in diffusion, and excessive weight gain. Both drugs were completely ceased in April this year. I have managed to lose 30 lbs and have 15 more to go before I can start the work up in hopes to be placed on the transplant list at Mayo/Jax. Since July I've had 3 bouts of bronchitis & antibiotics. Last Wednesday I had another brochoscopy and am waiting for the results.Thank you all for the support you have already given. I look forward to doing the same you. Many Thanks, /FLIPF/ILD 06 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2008 Report Share Posted September 28, 2008 Hi , Welcome to Breathe-Support! I'm so glad you decided to post and I'm happy to know that you've found reading previous posts helpful. There is so much collective knowledge, practical experience and wisdom in this group it never ceases to amaze me. I'm curious...do the doctors feel you've had restrictive lung disease since you were a child? You are so young to have to deal with this and yet it sounds as if you've been dealing with it for many many years already. Of course I feel that I'm to young for this nonsense and I'm 49. I hope they can get the repeated bronchits under control for your sake, it's no fun. I just had a mild bout of it myself and finish up my Levaquin tomorrow. Once again, welcome to the board. We have other members around your age and then members all the way up into their 80's. We run the entire spectrum here and I hope you find the support and friendship here that I have! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 New Memeber Hi to all. I have been a member for several weeks now reading post after post. By reading everyone else's posts it has belped me greatly with my own struggles. I felt like I should introduce myself as you have all been such a positive part of my life in the recent weeks.My name is . I'm a 33 yr old female in FL with IPF/ILD. Officially diagnosed Jan. 2006. I have lived with symptoms of the disease for as long as I remember and was mis-diagnosed with exercise induced asthma at age 9. I didn't find out I had a restricve lung disease until I was 21 yrs old and 5 months pregnant. After many years, many doctors and a move from GA to FL we were blessed to find the right doctor and a definite diagnosis. Although I had a few years of my IPF staying stable, it has taken a turn for the worse over the past 3 years. I now have 43% Vital Lung Capacity and my difussion capacity has wiggled between 16% and 48% recently. We have tried Prednison and Cellcept unsuccesfully as I experienced progression of scarring, a drop in diffusion, and excessive weight gain. Both drugs were completely ceased in April this year. I have managed to lose 30 lbs and have 15 more to go before I can start the work up in hopes to be placed on the transplant list at Mayo/Jax. Since July I've had 3 bouts of bronchitis & antibiotics. Last Wednesday I had another brochoscopy and am waiting for the results.Thank you all for the support you have already given. I look forward to doing the same you. Many Thanks, /FLIPF/ILD 06 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2008 Report Share Posted September 28, 2008 Hi , Welcome to Breathe-Support! I'm so glad you decided to post and I'm happy to know that you've found reading previous posts helpful. There is so much collective knowledge, practical experience and wisdom in this group it never ceases to amaze me. I'm curious...do the doctors feel you've had restrictive lung disease since you were a child? You are so young to have to deal with this and yet it sounds as if you've been dealing with it for many many years already. Of course I feel that I'm to young for this nonsense and I'm 49. I hope they can get the repeated bronchits under control for your sake, it's no fun. I just had a mild bout of it myself and finish up my Levaquin tomorrow. Once again, welcome to the board. We have other members around your age and then members all the way up into their 80's. We run the entire spectrum here and I hope you find the support and friendship here that I have! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 New Memeber Hi to all. I have been a member for several weeks now reading post after post. By reading everyone else's posts it has belped me greatly with my own struggles. I felt like I should introduce myself as you have all been such a positive part of my life in the recent weeks.My name is . I'm a 33 yr old female in FL with IPF/ILD. Officially diagnosed Jan. 2006. I have lived with symptoms of the disease for as long as I remember and was mis-diagnosed with exercise induced asthma at age 9. I didn't find out I had a restricve lung disease until I was 21 yrs old and 5 months pregnant. After many years, many doctors and a move from GA to FL we were blessed to find the right doctor and a definite diagnosis. Although I had a few years of my IPF staying stable, it has taken a turn for the worse over the past 3 years. I now have 43% Vital Lung Capacity and my difussion capacity has wiggled between 16% and 48% recently. We have tried Prednison and Cellcept unsuccesfully as I experienced progression of scarring, a drop in diffusion, and excessive weight gain. Both drugs were completely ceased in April this year. I have managed to lose 30 lbs and have 15 more to go before I can start the work up in hopes to be placed on the transplant list at Mayo/Jax. Since July I've had 3 bouts of bronchitis & antibiotics. Last Wednesday I had another brochoscopy and am waiting for the results.Thank you all for the support you have already given. I look forward to doing the same you. Many Thanks, /FLIPF/ILD 06 Quote Link to comment Share on other sites More sharing options...
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