Guest guest Posted April 22, 2003 Report Share Posted April 22, 2003 Welcome Libby. Cecilia from Perú, mom to Dessirée (05/07/99) Lovely husband _____ I've stopped 31 spam messages. You can too! Get your free, safe spam protection at www.cloudmark.com <http://www.cloudmark.com/spamnet?v1> <http://www.cloudmark.com/> Cloudmark SpamNet - Join the fight against spam! -----Mensaje original----- De: libbyedgal Enviado el: Martes, 22 de Abril de 2003 11:29 a.m. Para: parenting_autism Asunto: New to the group Hello everyone, I have 3 boys 8, 7, and 5 1/2. My oldest is " typical " my middle is ADHD, and my youngest is PDD-NOS with a mild sezuire disorder. My dh and I both work full time, and he is attempting to go to night school. We are tired all the time, and is hard playing pass the kids and juggling all the schedules. I am fortunate to have my two younger boys in a private school for kids with ASD along with their typical peers. They are doing well there. I am worried about my 7 year old. He is struggling with reading and it is frustrating to see him try so hard. My youngest son is doing good. He is verbal, but no conversation yet. He is starting to answer small questions and can ask for things he wants. He is finally potty trained during the day, but latley he has been having accidents. I am hoping he is just intersted in what he is doing and forgets. It never happens in the house- always ouside. Anyway..I ramble, sorry. Life is hard sometimes and beautiful others . I look forward to getting to know you all, and hear about your lives and experiances. Take care, Libby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2003 Report Share Posted April 22, 2003 Welcome, Libby! My name is , I am a stay at home mom in the Atlanta area to n (3 in July) who we think is moving toward an HFA dx (will find out in Oct), and Phoebe (10 mo today). I don't know how you do it with working, I can't imagine trying to manage the kids and work at the same time. I'm curious about your school for ASD kids ... where are you located and what is the school like? (SAHM in GA) MSN elizabethloht@... n 33, mo, no formal dx Phoebe, 10 wks ----- Original Message ----- > Hello everyone, > I have 3 boys 8, 7, and 5 1/2. My oldest is " typical " my middle is > ADHD, and my youngest is PDD-NOS with a mild sezuire disorder. > My dh and I both work full time, and he is attempting to go to night > school. We are tired all the time, and is hard playing pass the kids > and juggling all the schedules. I am fortunate to have my two younger > boys in a private school for kids with ASD along with their typical > peers. They are doing well there. I am worried about my 7 year old. > He is struggling with reading and it is frustrating to see him try so > hard. My youngest son is doing good. He is verbal, but no > conversation yet. He is starting to answer small questions and can > ask for things he wants. He is finally potty trained during the day, > but latley he has been having accidents. I am hoping he is just > intersted in what he is doing and forgets. It never happens in the > house- always ouside. > Anyway..I ramble, sorry. > Life is hard sometimes and beautiful others . > I look forward to getting to know you all, and hear about your lives > and experiances. > Take care, > Libby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2003 Report Share Posted April 22, 2003 Hi Libby! Welcome to the family! I have who is 13, HFA and who is 9 1/2 and aspergers. Both are in public schools, primarily general ed with supports and aides. Some of the help came easy, some I had to really fight for. Math concepts seem to be the hardest for my two, and reading comprehension is also a problem for . Sue in Waterford, MI Wife to Mark Mom to: , HFA, 13 9 1/2, AS/ADD Yahoo IM: smgaska1 Autism, the hardest puzzle to put together. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2003 Report Share Posted April 22, 2003 Hi Libby I'm wendy mom to who is 3.5. We life in PA near Philadelphia. My daughter isn't trained so I have no wisdom for you. Hope you catch up on sleep! We all need more sleep. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2003 Report Share Posted April 22, 2003 Hi Libby, Welcome to the list! Sissi Garvey Kids' Page http://www.isoa.net/~nitetrax/original.htm Boone's Art Page http://www.isoa.net/~nitetrax/bart.htm Dillon's Music Page http://www.geocities.com/flaremusic " If it doesn't spin, it's broke. " Boone Garvey (not a direct quote -- more like an attitude) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2003 Report Share Posted April 23, 2003 Hi , and thank you for your kind words. I live in central Ohio. My kids go to a school here that is for kids with ASD. The classes, are for the most part, half ASD and half typical. The school is naturalistic ABA. We also have a home program that goes along with it. I love the school, for the most part. Lol We still have our problems, and we are lacking a few things here and there, but it has only been open for a few years. I am intersted to know how your son's diagnoses comes out. I imagine it must be hard having a new baby, and a small child..( I've been there), but I know there are extra challenges when ou child has an ASD. Take care, Libby > > Welcome, Libby! > > My name is , I am a stay at home mom in the Atlanta area to n > (3 in July) who we think is moving toward an HFA dx (will find out in Oct), > and Phoebe (10 mo today). > > I don't know how you do it with working, I can't imagine trying to manage > the kids and work at the same time. I'm curious about your school for ASD > kids ... where are you located and what is the school like? > > (SAHM in GA) > MSN elizabethloht@h... > n 33, mo, no formal dx > Phoebe, 10 wks > > > > ----- Original Message ----- > From: " libbyedgal " <debrah@a...> > > > > Hello everyone, > > I have 3 boys 8, 7, and 5 1/2. My oldest is " typical " my middle is > > ADHD, and my youngest is PDD-NOS with a mild sezuire disorder. > > My dh and I both work full time, and he is attempting to go to night > > school. We are tired all the time, and is hard playing pass the kids > > and juggling all the schedules. I am fortunate to have my two younger > > boys in a private school for kids with ASD along with their typical > > peers. They are doing well there. I am worried about my 7 year old. > > He is struggling with reading and it is frustrating to see him try so > > hard. My youngest son is doing good. He is verbal, but no > > conversation yet. He is starting to answer small questions and can > > ask for things he wants. He is finally potty trained during the day, > > but latley he has been having accidents. I am hoping he is just > > intersted in what he is doing and forgets. It never happens in the > > house- always ouside. > > Anyway..I ramble, sorry. > > Life is hard sometimes and beautiful others . > > I look forward to getting to know you all, and hear about your lives > > and experiances. > > Take care, > > Libby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2003 Report Share Posted April 23, 2003 Ohio, huh. My brother is a prosecuting attourney in the Springfield area, if you know where that is. He specializes in domestic abuse, so if dh ever gives ya any trouble, lemme know : ) (just kidding, really). Your school sounds wonderful. You are so lucky. As you may have gathered from my recent posts, I am just now getting educated myself on schooling options. If that means relocating to another area, well, I'm open to that. I guess being an American, it seems strange to me that there are no facilities (or very very few) catering to the special needs niche and competing for our business. I will certainly keep you all posted on n's dx if we ever get in to see the specialist. (SAHM in GA) MSN elizabethloht@... n 33, mo, no formal dx Phoebe, 10 wks Re: New to the group > Hi , and thank you for your kind words. > I live in central Ohio. My kids go to a school here that is for kids > with ASD. The classes, are for the most part, half ASD and half > typical. The school is naturalistic ABA. We also have a home program > that goes along with it. I love the school, for the most part. Lol We > still have our problems, and we are lacking a few things here and > there, but it has only been open for a few years. > I am intersted to know how your son's diagnoses comes out. I imagine > it must be hard having a new baby, and a small child..( I've been > there), but I know there are extra challenges when ou child has an > ASD. > Take care, > Libby > > > > > > > > > > Welcome, Libby! > > > > My name is , I am a stay at home mom in the Atlanta area > to n > > (3 in July) who we think is moving toward an HFA dx (will find out > in Oct), > > and Phoebe (10 mo today). > > > > I don't know how you do it with working, I can't imagine trying to > manage > > the kids and work at the same time. I'm curious about your school > for ASD > > kids ... where are you located and what is the school like? > > > > (SAHM in GA) > > MSN elizabethloht@h... > > n 33, mo, no formal dx > > Phoebe, 10 wks > > > > > > > > ----- Original Message ----- > > From: " libbyedgal " <debrah@a...> > > > > > > > Hello everyone, > > > I have 3 boys 8, 7, and 5 1/2. My oldest is " typical " my middle is > > > ADHD, and my youngest is PDD-NOS with a mild sezuire disorder. > > > My dh and I both work full time, and he is attempting to go to > night > > > school. We are tired all the time, and is hard playing pass the > kids > > > and juggling all the schedules. I am fortunate to have my two > younger > > > boys in a private school for kids with ASD along with their > typical > > > peers. They are doing well there. I am worried about my 7 year > old. > > > He is struggling with reading and it is frustrating to see him > try so > > > hard. My youngest son is doing good. He is verbal, but no > > > conversation yet. He is starting to answer small questions and can > > > ask for things he wants. He is finally potty trained during the > day, > > > but latley he has been having accidents. I am hoping he is just > > > intersted in what he is doing and forgets. It never happens in the > > > house- always ouside. > > > Anyway..I ramble, sorry. > > > Life is hard sometimes and beautiful others . > > > I look forward to getting to know you all, and hear about your > lives > > > and experiances. > > > Take care, > > > Libby > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2003 Report Share Posted April 23, 2003 Do I know Springfield??? I used to live there. My hubby is from there..I graduated there. We moved from Spfld to Columbus for better services. There was nothing for Zach. It is so sad. When I asked the Special Ed teacher( at older ds school) if she knew anything about PDD or PDD-NOS..she said she never heard of it. UGH! At that time no one had said Autism to me..I think they were afraid to. I will let DH know that I now have connections. Good luck one your search. My one reccommendation is that you tr to find a program that includes peers. It has been very helpful for Zach. Libby > > > > > > Welcome, Libby! > > > > > > My name is , I am a stay at home mom in the Atlanta area > > to n > > > (3 in July) who we think is moving toward an HFA dx (will find out > > in Oct), > > > and Phoebe (10 mo today). > > > > > > I don't know how you do it with working, I can't imagine trying to > > manage > > > the kids and work at the same time. I'm curious about your school > > for ASD > > > kids ... where are you located and what is the school like? > > > > > > (SAHM in GA) > > > MSN elizabethloht@h... > > > n 33, mo, no formal dx > > > Phoebe, 10 wks > > > > > > > > > > > > ----- Original Message ----- > > > From: " libbyedgal " <debrah@a...> > > > > > > > > > > Hello everyone, > > > > I have 3 boys 8, 7, and 5 1/2. My oldest is " typical " my middle is > > > > ADHD, and my youngest is PDD-NOS with a mild sezuire disorder. > > > > My dh and I both work full time, and he is attempting to go to > > night > > > > school. We are tired all the time, and is hard playing pass the > > kids > > > > and juggling all the schedules. I am fortunate to have my two > > younger > > > > boys in a private school for kids with ASD along with their > > typical > > > > peers. They are doing well there. I am worried about my 7 year > > old. > > > > He is struggling with reading and it is frustrating to see him > > try so > > > > hard. My youngest son is doing good. He is verbal, but no > > > > conversation yet. He is starting to answer small questions and can > > > > ask for things he wants. He is finally potty trained during the > > day, > > > > but latley he has been having accidents. I am hoping he is just > > > > intersted in what he is doing and forgets. It never happens in the > > > > house- always ouside. > > > > Anyway..I ramble, sorry. > > > > Life is hard sometimes and beautiful others . > > > > I look forward to getting to know you all, and hear about your > > lives > > > > and experiances. > > > > Take care, > > > > Libby > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2003 Report Share Posted April 24, 2003 Welcome Libby ! I'm mom to Jacqui who is 8 and is HFA. I'm also mom to Jeff, who is 20. You will really enjoy it here! Nice to meet you. Penny :-D New to the group Hello everyone, I have 3 boys 8, 7, and 5 1/2. My oldest is " typical " my middle is ADHD, and my youngest is PDD-NOS with a mild sezuire disorder. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2003 Report Share Posted April 25, 2003 Hi, Libby! I haven't yet greeted you, at least I don't think so. I have five kids, one of the mothers of hundreds who is not obligated to use a signature line: Enrique, 16, AS; , almost 14, NT; Sophia, 9, NT; Putter, 7 ASD and very much so; Robbie, 4, NT. Salli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2009 Report Share Posted August 25, 2009 Hi all, I just joined the group today. I was diagnosed with idiopathic familial pulmonary fibrosis 4 years ago and I had a lung biopsy 3 years ago to confirm the diagnosis. Up until 2 weeks ago, it seemed to be dormant with no changes in my pulmonary functions. The only problem I seemed to have was my chronic dry cough. Then 2 weeks ago, after a routine pulmonary function test, we found that my lung capacity had decreased significantly and my CT scan shows that the fibrosis has increased. My doctor has now referred me to the transplant team. My doctor also put me on prednisone after being reluctant to do so. The prednisone took away my cough and did improve my breathing, however, it spiked my blood sugar to levels that sent me into the emergency room and 15 units of insulin. I was told that I was borderline diabetic, but I was always able to keep my sugar levels low through diet. So now, I am caught between a rock and a hard place, if I continue to take the prednisone, I am going to have to take regular insulin injections and follow a strict diabetic lifestyle. If I stop, then I go back to the cough and shortness of breath while I wait for my condition to deteriorate until I need the transplant. Needless to say, I am little bummed out about this. I am looking forward to hearing from others in the group and learning more about what I can do to live with this. Thanks Dov Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2009 Report Share Posted August 25, 2009 Hi Dov,Welcome to the group! I am still fairly new too. You will find this group to be extremely supportive, very knowledgeable, loving and kind. The encouragement and information I’ve gained in this short amount of time has prompted me to be pro-active in getting the treatment I need to live with this disease. I was diagnosed with IPF in May 2009 (age 53) after a chest x-ray, cat scan, blood work for connective tissue disease (none found), high-res-cat scan, pulmonary function test (PFT) and bronchoscopy biopsy with lavage to look for hypersensitivity pneumonitis (not found). My doctor is feels I had early stages of IPF back in Aug 2006 when I went to the doctors for symptoms they diagnosed pneumonia by chest x-ray. They sent me home with an antibiotic and I didn’t have breathing problems until this last year and now I’m at the moderate stage. I was recently seen by Dr. Ganesh Raghu at the University of Washington Medical Center in Seattle, WA. He believes my IPF is also Familial. I had a brother who was diagnosed with IPF in 2005 and died of respiratory failure at age 43; he was at the end-stage of the disease by time he got to UWMC. My mother died at age 56 in 1982 from a stroke but also had emphysema, my dad died at age 76 of lung cancer. I have one sister who is now going to go get a chest CT. I’m very concerned about the future health of my 3 children. Dr. Raghu asked us to participate in a research study with the University of Texas Southwestern Medical Center for familial IPF. Are you on any other drug treatment for IPF besides prednisone? My doctors put me on a combination drug therapy of Prednisone, Azathioprine, (chemotherapy drug) used to treat autoimmune diseases, and Acetylcysteine (NAC) (a powerful antioxidant) that thins the fluids in the lungs and breaks up the thick mucus and helps boost the immune system. They are powerful drugs to try and stop the scarring from continuing to damage our lungs and prolong our life. Unfortunately, as you probably know, there is no standard treatment plan, only research data for our doctors to go on. The side effects of these drugs are terrible, I’m so sorry you have to deal with diabetes too. C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Tuesday, August 25, 2009 7:40:43 PMSubject: New to the group Hi all, I just joined the group today. I was diagnosed with idiopathic familial pulmonary fibrosis 4 years ago and I had a lung biopsy 3 years ago to confirm the diagnosis. Up until 2 weeks ago, it seemed to be dormant with no changes in my pulmonary functions. The only problem I seemed to have was my chronic dry cough. Then 2 weeks ago, after a routine pulmonary function test, we found that my lung capacity had decreased significantly and my CT scan shows that the fibrosis has increased. My doctor has now referred me to the transplant team. My doctor also put me on prednisone after being reluctant to do so. The prednisone took away my cough and did improve my breathing, however, it spiked my blood sugar to levels that sent me into the emergency room and 15 units of insulin. I was told that I was borderline diabetic, but I was always able to keep my sugar levels low through diet. So now, I am caught between a rock and a hard place, if I continue to take the prednisone, I am going to have to take regular insulin injections and follow a strict diabetic lifestyle. If I stop, then I go back to the cough and shortness of breath while I wait for my condition to deteriorate until I need the transplant. Needless to say, I am little bummed out about this. I am looking forward to hearing from others in the group and learning more about what I can do to live with this. Thanks Dov Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2009 Report Share Posted August 26, 2009 Dov, Welcome to Breathe Support! I'm happy to welcome you hear but sorry that you have need of a group like this. I hope that you will find the information, support and friendship here that I have. I'm sorry you are struggling with the prednisone issue at the moment. Many of us (including myself) have been down that particular road. Since you have seen improvement in your symptoms with the prednisone the question becomes; Can I live with the side effects of this treatment? Only you can answer that. When I was first diagnosed I was on high doses of prednisone (up to 100mg per day) for several months. I had the same issues with my blood sugar that you describe. I had to test my blood sugar 2 or 3 times a day and was taking Humulin several times a week when my blood sugar rose too high. I worked hard to follow a diabetic diet and what I found that helped to control my blood sugar at least as much as diet was exercise. The days that I went to pulmonary rehab my blood sugars were much lower than the days I didn't. Dov, this is all making difficult choices and figuring out what you can live with in your battle with this disease. Prednisone is a very powerful drug. There is no debating that. It can have horrendous side effects. Not much room for argument there either. Knowledge is power however. If you end up having a transplant you will likely need to take prednisone then also so learning about the drug, the side effects, the possible complications will put you ahead of the game. You will hear many opinions about prednisone here. Everything from, no one should ever take it, to someone like me who was on very high doses and knows that it saved my life. Typically it's harder to find evidence that prednisone is terribly helpful to those with IPF/UIP but there are exceptions. Please keep reading and keep asking questions. We all understand and are ready and willing to help! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Tuesday, August 25, 2009 10:40:43 PMSubject: New to the group Hi all, I just joined the group today. I was diagnosed with idiopathic familial pulmonary fibrosis 4 years ago and I had a lung biopsy 3 years ago to confirm the diagnosis. Up until 2 weeks ago, it seemed to be dormant with no changes in my pulmonary functions. The only problem I seemed to have was my chronic dry cough. Then 2 weeks ago, after a routine pulmonary function test, we found that my lung capacity had decreased significantly and my CT scan shows that the fibrosis has increased. My doctor has now referred me to the transplant team. My doctor also put me on prednisone after being reluctant to do so. The prednisone took away my cough and did improve my breathing, however, it spiked my blood sugar to levels that sent me into the emergency room and 15 units of insulin. I was told that I was borderline diabetic, but I was always able to keep my sugar levels low through diet. So now, I am caught between a rock and a hard place, if I continue to take the prednisone, I am going to have to take regular insulin injections and follow a strict diabetic lifestyle. If I stop, then I go back to the cough and shortness of breath while I wait for my condition to deteriorate until I need the transplant.Needless to say, I am little bummed out about this. I am looking forward to hearing from others in the group and learning more about what I can do to live with this.ThanksDov Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2009 Report Share Posted August 26, 2009 dov welcome and sorry you're here as to the prednisone--diabetes issue- - sometimes you need to choose the lesser of two evils prednisone induced my diabetes, i did find that the sugar levels vary according to the dose of prednisone i do believe diabetes would have developed eventually anyway fortunately, my diabetes is controlled with pills and diet i would be in a lot worse shape regarding pulmonary fibrosis without prednisone -- so i am thankful that it works and i deal with the side effects the endocrinologist said that after transplant, the prednisone level might be so high, that insulin might be required fortunately, high doses (40 mgs) prednisone stabilized me, so i was able to go from the active transplant list to the inactive list instead of needing o2 24/7, now i need it for exertion and sleep i rarely use it during the day while in the house with the a/c on prednisone does not help everyone, some ild's are responsive to it and some are not by the way, miss nosy is curious as to where you live and... the recommendation is that you been seen at a hospital that specializes in interstitial lung diseases other people on the board will tell you about the centers of excellence other people on the board will tell you how much they dislike prednisone i did gain weight with prednisone -- about 1 pound a month on 10 mgs -- that stabilized after about 15 - 20 pounds since the diabetes and learning to count carbs (not calories), i have lost 15- 20 pounds i also highly recommend taking a diabetes course at your local hospital contact the American diabetes association for their literature i also took out lots of cookbooks on diabetes from the library to read the introductions and information they provided regarding diabetes didn't really care about the specific recipes Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: New to the groupTo: Breathe-Support Date: Tuesday, August 25, 2009, 10:40 PM Hi all, I just joined the group today. I was diagnosed with idiopathic familial pulmonary fibrosis 4 years ago and I had a lung biopsy 3 years ago to confirm the diagnosis. Up until 2 weeks ago, it seemed to be dormant with no changes in my pulmonary functions. The only problem I seemed to have was my chronic dry cough. Then 2 weeks ago, after a routine pulmonary function test, we found that my lung capacity had decreased significantly and my CT scan shows that the fibrosis has increased. My doctor has now referred me to the transplant team. My doctor also put me on prednisone after being reluctant to do so. The prednisone took away my cough and did improve my breathing, however, it spiked my blood sugar to levels that sent me into the emergency room and 15 units of insulin. I was told that I was borderline diabetic, but I was always able to keep my sugar levels low through diet. So now, I am caught between a rock and a hard place, if I continue to take the prednisone, I am going to have to take regular insulin injections and follow a strict diabetic lifestyle. If I stop, then I go back to the cough and shortness of breath while I wait for my condition to deteriorate until I need the transplant.Needless to say, I am little bummed out about this. I am looking forward to hearing from others in the group and learning more about what I can do to live with this.ThanksDov Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2009 Report Share Posted August 26, 2009 Joyce, Thank you for sharing such good news and positive results! All of what you said is worth celebrating! Congrats on your weight loss too!As you know, Prednisone or maybe the combo of drugs I take had a reverse affect on me. I have lost 9 lbs and still losing, which is good because the doc wants me to lose 35lbs. I can see a difference in my breathing when walking and my acid reflux is better since losing the weight. Wired and fired up, thats me! It's been kind of cool in that fact that I get my work done really fast. But having my thoughts and worries spinning around and around in my head drives me crazy at times. Dr. Raghu ordered my Prednisone be reduced from 40mg to 20mg. So, maybe I'll start to slow down a little. C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Wednesday, August 26, 2009 6:13:32 AMSubject: Re: New to the group dov welcome and sorry you're here as to the prednisone-- diabetes issue- - sometimes you need to choose the lesser of two evils prednisone induced my diabetes, i did find that the sugar levels vary according to the dose of prednisone i do believe diabetes would have developed eventually anyway fortunately, my diabetes is controlled with pills and diet i would be in a lot worse shape regarding pulmonary fibrosis without prednisone -- so i am thankful that it works and i deal with the side effects the endocrinologist said that after transplant, the prednisone level might be so high, that insulin might be required fortunately, high doses (40 mgs) prednisone stabilized me, so i was able to go from the active transplant list to the inactive list instead of needing o2 24/7, now i need it for exertion and sleep i rarely use it during the day while in the house with the a/c on prednisone does not help everyone, some ild's are responsive to it and some are not by the way, miss nosy is curious as to where you live and... the recommendation is that you been seen at a hospital that specializes in interstitial lung diseases other people on the board will tell you about the centers of excellence other people on the board will tell you how much they dislike prednisone i did gain weight with prednisone -- about 1 pound a month on 10 mgs -- that stabilized after about 15 - 20 pounds since the diabetes and learning to count carbs (not calories), i have lost 15- 20 pounds i also highly recommend taking a diabetes course at your local hospital contact the American diabetes association for their literature i also took out lots of cookbooks on diabetes from the library to read the introductions and information they provided regarding diabetes didn't really care about the specific recipes Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: dovaltman <dovaltman (AT) yahoo (DOT) com>Subject: New to the groupTo: Breathe-Support@ yahoogroups. comDate: Tuesday, August 25, 2009, 10:40 PM Hi all, I just joined the group today. I was diagnosed with idiopathic familial pulmonary fibrosis 4 years ago and I had a lung biopsy 3 years ago to confirm the diagnosis. Up until 2 weeks ago, it seemed to be dormant with no changes in my pulmonary functions. The only problem I seemed to have was my chronic dry cough. Then 2 weeks ago, after a routine pulmonary function test, we found that my lung capacity had decreased significantly and my CT scan shows that the fibrosis has increased. My doctor has now referred me to the transplant team. My doctor also put me on prednisone after being reluctant to do so. The prednisone took away my cough and did improve my breathing, however, it spiked my blood sugar to levels that sent me into the emergency room and 15 units of insulin. I was told that I was borderline diabetic, but I was always able to keep my sugar levels low through diet. So now, I am caught between a rock and a hard place, if I continue to take the prednisone, I am going to have to take regular insulin injections and follow a strict diabetic lifestyle. If I stop, then I go back to the cough and shortness of breath while I wait for my condition to deteriorate until I need the transplant.Needless to say, I am little bummed out about this. I am looking forward to hearing from others in the group and learning more about what I can do to live with this.ThanksDov Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2009 Report Share Posted August 26, 2009 my pulmonary decreased the prednisone at a slower rate from 40 to 30 for a month 30 to 25 for a month 20 for a month 15 for a month goal was 10 it took several months high dose was temporary -- maybe a month Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: New to the groupTo: Breathe-Support Date: Wednesday, August 26, 2009, 9:41 AM Joyce, Thank you for sharing such good news and positive results! All of what you said is worth celebrating! Congrats on your weight loss too!As you know, Prednisone or maybe the combo of drugs I take had a reverse affect on me. I have lost 9 lbs and still losing, which is good because the doc wants me to lose 35lbs. I can see a difference in my breathing when walking and my acid reflux is better since losing the weight. Wired and fired up, thats me! It's been kind of cool in that fact that I get my work done really fast. But having my thoughts and worries spinning around and around in my head drives me crazy at times. Dr. Raghu ordered my Prednisone be reduced from 40mg to 20mg. So, maybe I'll start to slow down a little. C_53_Familial IPF_5/09Washington From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, August 26, 2009 6:13:32 AMSubject: Re: New to the group dov welcome and sorry you're here as to the prednisone-- diabetes issue- - sometimes you need to choose the lesser of two evils prednisone induced my diabetes, i did find that the sugar levels vary according to the dose of prednisone i do believe diabetes would have developed eventually anyway fortunately, my diabetes is controlled with pills and diet i would be in a lot worse shape regarding pulmonary fibrosis without prednisone -- so i am thankful that it works and i deal with the side effects the endocrinologist said that after transplant, the prednisone level might be so high, that insulin might be required fortunately, high doses (40 mgs) prednisone stabilized me, so i was able to go from the active transplant list to the inactive list instead of needing o2 24/7, now i need it for exertion and sleep i rarely use it during the day while in the house with the a/c on prednisone does not help everyone, some ild's are responsive to it and some are not by the way, miss nosy is curious as to where you live and... the recommendation is that you been seen at a hospital that specializes in interstitial lung diseases other people on the board will tell you about the centers of excellence other people on the board will tell you how much they dislike prednisone i did gain weight with prednisone -- about 1 pound a month on 10 mgs -- that stabilized after about 15 - 20 pounds since the diabetes and learning to count carbs (not calories), i have lost 15- 20 pounds i also highly recommend taking a diabetes course at your local hospital contact the American diabetes association for their literature i also took out lots of cookbooks on diabetes from the library to read the introductions and information they provided regarding diabetes didn't really care about the specific recipes Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: dovaltman <dovaltman (AT) yahoo (DOT) com>Subject: New to the groupTo: Breathe-Support@ yahoogroups. comDate: Tuesday, August 25, 2009, 10:40 PM Hi all, I just joined the group today. I was diagnosed with idiopathic familial pulmonary fibrosis 4 years ago and I had a lung biopsy 3 years ago to confirm the diagnosis. Up until 2 weeks ago, it seemed to be dormant with no changes in my pulmonary functions. The only problem I seemed to have was my chronic dry cough. Then 2 weeks ago, after a routine pulmonary function test, we found that my lung capacity had decreased significantly and my CT scan shows that the fibrosis has increased. My doctor has now referred me to the transplant team. My doctor also put me on prednisone after being reluctant to do so. The prednisone took away my cough and did improve my breathing, however, it spiked my blood sugar to levels that sent me into the emergency room and 15 units of insulin. I was told that I was borderline diabetic, but I was always able to keep my sugar levels low through diet. So now, I am caught between a rock and a hard place, if I continue to take the prednisone, I am going to have to take regular insulin injections and follow a strict diabetic lifestyle. If I stop, then I go back to the cough and shortness of breath while I wait for my condition to deteriorate until I need the transplant.Needless to say, I am little bummed out about this. I am looking forward to hearing from others in the group and learning more about what I can do to live with this.ThanksDov start: 0000-00-00 end: 0000-00-00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2009 Report Share Posted August 26, 2009 Joyce,That's good to know. Dr. Raghu sent the order to reduce prednisone to my pulmo doc, who I have an appt. with on Friday. So, I thought I better wait till I seem him to tell me how to taper down. My pulmo doc got the order from Dr. R. for my oxygen need for exertion. He sent me an e-mail today saying he would put that in right away. I suppose it will be sent to Apria where I received my CPAP machine. Anything I need to know about that? From what I've read from group members, I should ask for liquid oxygen, right? C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Wednesday, August 26, 2009 7:33:23 PMSubject: Re: New to the group my pulmonary decreased the prednisone at a slower rate from 40 to 30 for a month 30 to 25 for a month 20 for a month 15 for a month goal was 10 it took several months high dose was temporary -- maybe a month Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: dovaltman <dovaltman (AT) yahoo (DOT) com>Subject: New to the groupTo: Breathe-Support@ yahoogroups. comDate: Tuesday, August 25, 2009, 10:40 PM Hi all, I just joined the group today. I was diagnosed with idiopathic familial pulmonary fibrosis 4 years ago and I had a lung biopsy 3 years ago to confirm the diagnosis. Up until 2 weeks ago, it seemed to be dormant with no changes in my pulmonary functions. The only problem I seemed to have was my chronic dry cough. Then 2 weeks ago, after a routine pulmonary function test, we found that my lung capacity had decreased significantly and my CT scan shows that the fibrosis has increased. My doctor has now referred me to the transplant team. My doctor also put me on prednisone after being reluctant to do so. The prednisone took away my cough and did improve my breathing, however, it spiked my blood sugar to levels that sent me into the emergency room and 15 units of insulin. I was told that I was borderline diabetic, but I was always able to keep my sugar levels low through diet. So now, I am caught between a rock and a hard place, if I continue to take the prednisone, I am going to have to take regular insulin injections and follow a strict diabetic lifestyle. If I stop, then I go back to the cough and shortness of breath while I wait for my condition to deteriorate until I need the transplant.Needless to say, I am little bummed out about this. I am looking forward to hearing from others in the group and learning more about what I can do to live with this.ThanksDov start: 0000-00-00 end: 0000-00-00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2009 Report Share Posted August 26, 2009 , I'll stick with my canisters and Lincare. I've had a headache all day and I was cold for part of the day even though it was hot in the house. My blood sugar is low in the morning and high after I eat. I don't know if that has anything to do with it or not.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho From: dovaltman <dovaltman (AT) yahoo (DOT) com>Subject: New to the groupTo: Breathe-Support@ yahoogroups. comDate: Tuesday, August 25, 2009, 10:40 PM Hi all, I just joined the group today. I was diagnosed with idiopathic familial pulmonary fibrosis 4 years ago and I had a lung biopsy 3 years ago to confirm the diagnosis. Up until 2 weeks ago, it seemed to be dormant with no changes in my pulmonary functions. The only problem I seemed to have was my chronic dry cough. Then 2 weeks ago, after a routine pulmonary function test, we found that my lung capacity had decreased significantly and my CT scan shows that the fibrosis has increased. My doctor has now referred me to the transplant team. My doctor also put me on prednisone after being reluctant to do so. The prednisone took away my cough and did improve my breathing, however, it spiked my blood sugar to levels that sent me into the emergency room and 15 units of insulin. I was told that I was borderline diabetic, but I was always able to keep my sugar levels low through diet. So now, I am caught between a rock and a hard place, if I continue to take the prednisone, I am going to have to take regular insulin injections and follow a strict diabetic lifestyle. If I stop, then I go back to the cough and shortness of breath while I wait for my condition to deteriorate until I need the transplant.Needless to say, I am little bummed out about this. I am looking forward to hearing from others in the group and learning more about what I can do to live with this.ThanksDov start: 0000-00-00 end: 0000-00-00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 Joyce,Do you use O2 to sleep at night? I use a CPAP for my obstructive sleep apnea, so I wonder if I need O2 at night? The respiratoray therapist said during my sleep test my O2 sats dropped below 90 when I had periods of no breathing, but if the CPAP is working to correct that then maybe I don't need O2. C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Thursday, August 27, 2009 6:25:34 AMSubject: Re: New to the group if possible, try both, and then decide which is right for you i started with the little Helios had a problem they let me try the little tanks -- didn't like them -- they were too heavy at that time i was only using demand 2 so continued with little helios then last year when condition changed, needed more o2 -- continuous at times -- ended up with marathon like the marathon -- need to buy metal tanks for back up for when we go away for the day if i plan on lots of walking if i plan on lots of sitting, i fill up little helios and marathon -- they are "fraternal twins" that's what i tell people when they see me wheeling both of them in the baby stroller this disease if very weird -- i can sit without O2, but when i start moving around, i need o2, the level varies with the activity sometimes i can walk the dog using demand 4, sometimes i need to walk the dog with contnuous 3 treadmill requires continuous 4 that's why the oximeter is so important another weird thing is that i get these strange feelings in upper chest, like i am short of breath, but when i check oximeter -- sat reads 98% so doc gave me flonase for post nasal drip sitting quietly in house don't need o2, talking on the phone makes me cough, so i need o2 to talk on phone it's really weird Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: dovaltman <dovaltman (AT) yahoo (DOT) com>Subject: New to the groupTo: Breathe-Support@ yahoogroups. comDate: Tuesday, August 25, 2009, 10:40 PM Hi all, I just joined the group today. I was diagnosed with idiopathic familial pulmonary fibrosis 4 years ago and I had a lung biopsy 3 years ago to confirm the diagnosis. Up until 2 weeks ago, it seemed to be dormant with no changes in my pulmonary functions. The only problem I seemed to have was my chronic dry cough. Then 2 weeks ago, after a routine pulmonary function test, we found that my lung capacity had decreased significantly and my CT scan shows that the fibrosis has increased. My doctor has now referred me to the transplant team. My doctor also put me on prednisone after being reluctant to do so. The prednisone took away my cough and did improve my breathing, however, it spiked my blood sugar to levels that sent me into the emergency room and 15 units of insulin. I was told that I was borderline diabetic, but I was always able to keep my sugar levels low through diet. So now, I am caught between a rock and a hard place, if I continue to take the prednisone, I am going to have to take regular insulin injections and follow a strict diabetic lifestyle. If I stop, then I go back to the cough and shortness of breath while I wait for my condition to deteriorate until I need the transplant.Needless to say, I am little bummed out about this. I am looking forward to hearing from others in the group and learning more about what I can do to live with this.ThanksDovstart: 0000-00-00 end: 0000-00-00 start: 0000-00-00 end: 0000-00-00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 Hi Beverley,I'm getting ready to head out the door to work, but I wanted to wish you a better day today!Take care, I'm always thinking about you and wishing you well. C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Wednesday, August 26, 2009 8:25:52 PMSubject: Re: New to the group , I'll stick with my canisters and Lincare. I've had a headache all day and I was cold for part of the day even though it was hot in the house. My blood sugar is low in the morning and high after I eat. I don't know if that has anything to do with it or not.Beverley Joy,71, UIP,NSIP 1-09,Diabetes, Sjogren's, Fibromyalgia Idaho From: dovaltman <dovaltman (AT) yahoo (DOT) com>Subject: New to the groupTo: Breathe-Support@ yahoogroups. comDate: Tuesday, August 25, 2009, 10:40 PM Hi all, I just joined the group today. I was diagnosed with idiopathic familial pulmonary fibrosis 4 years ago and I had a lung biopsy 3 years ago to confirm the diagnosis. Up until 2 weeks ago, it seemed to be dormant with no changes in my pulmonary functions. The only problem I seemed to have was my chronic dry cough. Then 2 weeks ago, after a routine pulmonary function test, we found that my lung capacity had decreased significantly and my CT scan shows that the fibrosis has increased. My doctor has now referred me to the transplant team. My doctor also put me on prednisone after being reluctant to do so. The prednisone took away my cough and did improve my breathing, however, it spiked my blood sugar to levels that sent me into the emergency room and 15 units of insulin. I was told that I was borderline diabetic, but I was always able to keep my sugar levels low through diet. So now, I am caught between a rock and a hard place, if I continue to take the prednisone, I am going to have to take regular insulin injections and follow a strict diabetic lifestyle. If I stop, then I go back to the cough and shortness of breath while I wait for my condition to deteriorate until I need the transplant.Needless to say, I am little bummed out about this. I am looking forward to hearing from others in the group and learning more about what I can do to live with this.ThanksDov start: 0000-00-00 end: 0000-00-00 start: 0000-00-00 end: 0000-00-00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2009 Report Share Posted August 28, 2009 lisa yes i use o2 for sleeping at night -- something about shallow breathing -- no i do not have sleep apnea and do not need a c-pap - so i know nothing about those issues Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: New to the groupTo: Breathe-Support Date: Thursday, August 27, 2009, 9:58 AM Joyce,Do you use O2 to sleep at night? I use a CPAP for my obstructive sleep apnea, so I wonder if I need O2 at night? The respiratoray therapist said during my sleep test my O2 sats dropped below 90 when I had periods of no breathing, but if the CPAP is working to correct that then maybe I don't need O2. C_53_Familial IPF_5/09Washington From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, August 27, 2009 6:25:34 AMSubject: Re: New to the group if possible, try both, and then decide which is right for you i started with the little Helios had a problem they let me try the little tanks -- didn't like them -- they were too heavy at that time i was only using demand 2 so continued with little helios then last year when condition changed, needed more o2 -- continuous at times -- ended up with marathon like the marathon -- need to buy metal tanks for back up for when we go away for the day if i plan on lots of walking if i plan on lots of sitting, i fill up little helios and marathon -- they are "fraternal twins" that's what i tell people when they see me wheeling both of them in the baby stroller this disease if very weird -- i can sit without O2, but when i start moving around, i need o2, the level varies with the activity sometimes i can walk the dog using demand 4, sometimes i need to walk the dog with contnuous 3 treadmill requires continuous 4 that's why the oximeter is so important another weird thing is that i get these strange feelings in upper chest, like i am short of breath, but when i check oximeter -- sat reads 98% so doc gave me flonase for post nasal drip sitting quietly in house don't need o2, talking on the phone makes me cough, so i need o2 to talk on phone it's really weird Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: dovaltman <dovaltman (AT) yahoo (DOT) com>Subject: New to the groupTo: Breathe-Support@ yahoogroups. comDate: Tuesday, August 25, 2009, 10:40 PM Hi all, I just joined the group today. I was diagnosed with idiopathic familial pulmonary fibrosis 4 years ago and I had a lung biopsy 3 years ago to confirm the diagnosis. Up until 2 weeks ago, it seemed to be dormant with no changes in my pulmonary functions. The only problem I seemed to have was my chronic dry cough. Then 2 weeks ago, after a routine pulmonary function test, we found that my lung capacity had decreased significantly and my CT scan shows that the fibrosis has increased. My doctor has now referred me to the transplant team. My doctor also put me on prednisone after being reluctant to do so. The prednisone took away my cough and did improve my breathing, however, it spiked my blood sugar to levels that sent me into the emergency room and 15 units of insulin. I was told that I was borderline diabetic, but I was always able to keep my sugar levels low through diet. So now, I am caught between a rock and a hard place, if I continue to take the prednisone, I am going to have to take regular insulin injections and follow a strict diabetic lifestyle. If I stop, then I go back to the cough and shortness of breath while I wait for my condition to deteriorate until I need the transplant.Needless to say, I am little bummed out about this. I am looking forward to hearing from others in the group and learning more about what I can do to live with this.ThanksDovstart: 0000-00-00 end: 0000-00-00 start: 0000-00-00 end: 0000-00-00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2009 Report Share Posted August 29, 2009 Beverley Joy, is thinking about you. I am thinking about you, and I know we have all missed you too. Take good care of yourself and don't overdo. Seems like when we get sick, so many things pile up Get better and we'll catch up very soon. Jerry/Mississippi/54/IPF/dx April 05Who believes that hard times help us appreciate the good times even more. From: dovaltman <dovaltman (AT) yahoo (DOT) com>Subject: New to the groupTo: Breathe-Support@ yahoogroups. comDate: Tuesday, August 25, 2009, 10:40 PM Hi all, I just joined the group today. I was diagnosed with idiopathic familial pulmonary fibrosis 4 years ago and I had a lung biopsy 3 years ago to confirm the diagnosis. Up until 2 weeks ago, it seemed to be dormant with no changes in my pulmonary functions. The only problem I seemed to have was my chronic dry cough. Then 2 weeks ago, after a routine pulmonary function test, we found that my lung capacity had decreased significantly and my CT scan shows that the fibrosis has increased. My doctor has now referred me to the transplant team. My doctor also put me on prednisone after being reluctant to do so. The prednisone took away my cough and did improve my breathing, however, it spiked my blood sugar to levels that sent me into the emergency room and 15 units of insulin. I was told that I was borderline diabetic, but I was always able to keep my sugar levels low through diet. So now, I am caught between a rock and a hard place, if I continue to take the prednisone, I am going to have to take regular insulin injections and follow a strict diabetic lifestyle. If I stop, then I go back to the cough and shortness of breath while I wait for my condition to deteriorate until I need the transplant.Needless to say, I am little bummed out about this. I am looking forward to hearing from others in the group and learning more about what I can do to live with this.ThanksDovstart: 0000-00-00 end: 0000-00-00 start: 0000-00-00 end: 0000-00-00 Quote Link to comment Share on other sites More sharing options...
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