Guest guest Posted September 30, 2008 Report Share Posted September 30, 2008 Peggy, I've been married for 14 years and have a 12 yr. old son. I'm almost directly across the map from you in Palm Coast, just south of St. Augustine. Thank you for the warm welcome! > > > > 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, > > /FL > > IPF/ILD 06 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2008 Report Share Posted September 30, 2008 , Initially being diagnosed is surely emotional. I consumed myself with reading information about PF in the begining. It was even more emotional than the diagnosis. I wish you the best as well and thank you. > > hiya brandy! > monique here from australia! > I am new here too and am 33 years old and have just been diagnosed with > pf! a very real and scary situation. pretty much an emotional > rollercoaster for the last 2 weeks. > > just wanted to welcome you and say how welcomed i have felt by other > members on this site, it is amazing how caring and friendly and helpful > everyone here is.......so welcome from me too! > > i have many questions and will surely be asking lots and lots,always > ask,,, thats what i have learnt through my journey so far with > polymyositis and now this! > > kindest regards > monique > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2008 Report Share Posted September 30, 2008 i know! i had to stop there last week, as it was getting too much for me...all the info, just sent me on a spin for ages! i have a look now, but only to this site pretty much, as the other does my head in,,,,, too grim!! xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2008 Report Share Posted September 30, 2008 Welcome to the newcomers....., you caught my attention. I'm also one of the babies here, age wise. I recently turned 35, but was diagnosed with PF at 33. Welcome to the group! Kirkwood Hermansky-Pudlak Syndrome albinism02/pf 06 www.heatherkirkwood.blogspot.com > > hiya brandy! > monique here from australia! > I am new here too and am 33 years old and have just been diagnosed with > pf! a very real and scary situation. pretty much an emotional > rollercoaster for the last 2 weeks. > > just wanted to welcome you and say how welcomed i have felt by other > members on this site, it is amazing how caring and friendly and helpful > everyone here is.......so welcome from me too! > > i have many questions and will surely be asking lots and lots,always > ask,,, thats what i have learnt through my journey so far with > polymyositis and now this! > > kindest regards > monique > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2008 Report Share Posted October 1, 2008 Hi , Well we will have to meet soon. My daughter says she wasn't to take me to St Augustine to stay in a Bed & breakfast. We'll see. Anytime you want to hit 40 and come straight across to 314 turn left 6 1/2 miles.."HELLO" Oh that would be such fun. Just so you and the other newbies, If you will sign off with your name, state and DX. It makes it easier to respond to you. Some of us (me) have OD (oxgin depravation to the brain lol thats a joke most of the time..) And can't remember who we're posting to. Thanks, Can't wait to meet ya. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Peggy, I've been married for 14 years and have a 12 yr. old son. I'm almost directly across the map from you in Palm Coast, just south of St. Augustine. Thank you for the warm welcome!> >> > 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,> > /FL> > IPF/ILD 06> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2008 Report Share Posted October 1, 2008 Hi , Hope you have recouped from your BIG house visit. I just hate to see you young people with this monster hanging on to you. God Bless. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Welcome to the newcomers....., you caught my attention. I'm also one of the babies here, age wise. I recently turned 35, but was diagnosed with PF at 33. Welcome to the group! KirkwoodHermansky-Pudlak Syndrome albinism02/pf 06www.heatherkirkwood.blogspot.com>> hiya brandy!> monique here from australia!> I am new here too and am 33 years old and have just been diagnosed with > pf! a very real and scary situation. pretty much an emotional > rollercoaster for the last 2 weeks.> > just wanted to welcome you and say how welcomed i have felt by other > members on this site, it is amazing how caring and friendly and helpful > everyone here is.......so welcome from me too!> > i have many questions and will surely be asking lots and lots,always > ask,,, thats what i have learnt through my journey so far with > polymyositis and now this!> > kindest regards> monique> Quote Link to comment Share on other sites More sharing options...
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