Guest guest Posted July 7, 2003 Report Share Posted July 7, 2003 - my daughter was told my CF CEnter that she could not take wood shop at Middle SChool - too much dust... Ask your Drs. at CF Center... Rosemary in NY with 3 children (12, 10 and 6) with CF. I have a dog named TOBI and coined the phrase " BREATHE DAMMIT " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2009 Report Share Posted August 4, 2009 Hi ! Nice to meet you. I can look back now and wish I had known or that at least the doctor's would have known not to leave things unchecked. Like GERD. I thought as long as the heartburn pain was gone that the med was working. Little did I know that the regurgitation is supposed to be eliminated too, and if not, then the med isn't working. I just learned that a few weeks ago after years of living with continued symptoms silently destroying my lungs (if that is the cause). Then there was note in my file to follow-up in 4 weeks for another chest x-ray after my pneumonia diagnosis in 2006. No push from the doctors there either. But last year, they hassled me with constant notices to get a routine preventive colonoscopy done just because I am over 50 years old! My primary care doctor put me on meds and never asked me if it was relieving my symptoms. The only diseases they checked are the ones that improve by blood test reading (like my high cholesterol and thyroid problem). It's frustrating, but I can't look back now. We live in an imperfect world; the health care system and doctors included. All I know now is that I have to take charge of my health, ask and demand if necessary to get the treatment I think I need. I told my kids this is a learning process for them as well to not let things go when it comes to your health. It's your body, if you feel something is not well, keep pushing until you've exhausted every avenue. Don't just shrug your shoulders and don't think the doctor knows everything! C > > > > Dear Angie and Barbara Jean! > > > > Welcome to > > the group! I am still a newbie 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 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), as a > result of > > these tests the pulmonary specialist diagnosed me with Idiopathic > Pulmonary > > Fibrosis (IPF). I am already at a severe stage of the disease, my > doctor is > > quite certain I had IPF back in Aug 2006 when I went to the doctors > for > > symptoms they diagnosed as pneumonia by chest x-ray. They sent me home > with an > > antibiotic. > > > > At the > > present time my treatment consists of the following: Prednisone > (Corticosteroids) > > (6-week treatment) used for suppress the immune system and > inflammation in the > > lungs. Azathioprine (Chemotherapy Drug) used to treat autoimmune > > diseases. Acetylcysteine (a powerful antioxidant) is a liquid chemical > > that thins the fluids in the lungs and breaks up the thick mucus. It > helps boost > > the immune system. All these meds have severe side effects and weekly > blood > > tests are required to check kidney function and red blood cell > production. > > > > The results > > of my PFT are not very good: Forced vital capacity (FVC)52% (This > measures the amount of air you can exhale with force after you inhale > > as deeply as possible.) Forced > > expiratory volume (FEV)60% (This > > measures the amount of air you can exhale with force in one breath.) > Total lung capacity (TLC) 49% (This measures the amount of air in your > lungs after you inhale as deeply as > > possible.)DLCO (Diffusing Capacity of the Lung (DCL) for > > Carbon Monoxide) � " 34% (Measures the > > ability of the lungs to transfer gases from the air to the blood. > I’m not on > > oxygen, but feel I need it to exercise. > > > > > > I have also suffered from GERD (acid-reflux > > disease) for several years and have been on Prilosec (now doubled) > with little > > relief. I have an appointment with a Gastroenterologist next week to > further > > evaluate this disease and find a better treatment. GERD can be a > contributing factor to lung > > inflammation and scarring. The acid backs up in the esophagus and can > aspirate into > > the lungs especially while sleeping. I was tested for Sleep Apnea and > have > > that. I now sleep with a CPAP machine and facial mask. I am also > medicated for > > high cholesterol and hypo-thyroidism. > > > > I am a > > single working mom living alone in small town called Grapeview in > Washingtonstate, very close to Seattle. I have 3 adult children, a > > daughter 29, son 23, and daughter 20. My oldest daughter lives in > Californiaand the two youngest are still in > > college and though they don’t live with me, they are very > dependent on me > > financially. My son will graduate with a > > degree in Nutrition (to become a Registered Dietician) in June 2010. > My youngest daughter is attending the > > community college working towards a degree program in Medical > Assistant. > > > > The kids > > and I were terrified at first because I also had a brother (their > Uncle) who died > > from IPF (respiratory failure) within 4 months of diagnosis in 2005 at > age 43. > > He was a drug user and homeless when he came to live with me > complaining of > > breathlessness and severe coughing, he was being seen by a public > health clinic > > for asthma! He got a referral to the > > University of Washington Medical Center in Seattleand they told him it > was IPF > > probably caused from inhaling chemicals. He died 2 days after coming > home from his surgical lung biopsy; he never > > started treatment other than being on oxygen 24/7 from day one. I > never did look into my brothers results > > after his death because we all assumed is was his poor lifestyle. I > didn’t > > think I would ever need to know any more about this disease and never > thought > > in a million years that I would be affected by it. Now I need to know > more. My doc is giving me > > a referral for further evaluation at the UWMC. I still have a lot of > evaluations to go through before I settle for it just being IPF. > > > > > > I alos started > > seeing a private counselor who deals with terminally ill patients and > > caregivers. I had plans for the second-half of my life and that > changed > > overnight. So, I am dealing with some anger and depression, but > I’m learning how to > > set new priorities and live each day as it comes. > > > > > > I’m > > thankful for finding this group…support, encouragement, > understanding. Friends-in-kind...the best medicine for this disease. > > > > > > C_53_IPF_5/09 > > Washington-the-Evergreen-state > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2009 Report Share Posted August 9, 2009 C - you nailed it. That's exactly right. Hermansky-Pudlak Syndrome albinism 02 / PF 06> > >> > > Dear Angie and Barbara Jean!> > >> > > Welcome to> > > the group! I am still a newbie 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 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), as a> > result of> > > these tests the pulmonary specialist diagnosed me with Idiopathic> > Pulmonary> > > Fibrosis (IPF). I am already at a severe stage of the disease, my> > doctor is> > > quite certain I had IPF back in Aug 2006 when I went to the doctors> > for> > > symptoms they diagnosed as pneumonia by chest x-ray. They sent me home> > with an> > > antibiotic.> > >> > > At the> > > present time my treatment consists of the following: Prednisone> > (Corticosteroids)> > > (6-week treatment) used for suppress the immune system and> > inflammation in the> > > lungs. Azathioprine (Chemotherapy Drug) used to treat autoimmune> > > diseases. Acetylcysteine (a powerful antioxidant) is a liquid chemical> > > that thins the fluids in the lungs and breaks up the thick mucus. It> > helps boost> > > the immune system. All these meds have severe side effects and weekly> > blood> > > tests are required to check kidney function and red blood cell> > production.> > >> > > The results> > > of my PFT are not very good: Forced vital capacity (FVC)52% (This> > measures the amount of air you can exhale with force after you inhale> > > as deeply as possible.) Forced> > > expiratory volume (FEV)60% (This> > > measures the amount of air you can exhale with force in one breath.)> > Total lung capacity (TLC) 49% (This measures the amount of air in your> > lungs after you inhale as deeply as> > > possible.)DLCO (Diffusing Capacity of the Lung (DCL) for> > > Carbon Monoxide) �"34% (Measures the> > > ability of the lungs to transfer gases from the air to the blood.> > I’m not on> > > oxygen, but feel I need it to exercise.> > >> > >> > > I have also suffered from GERD (acid-reflux> > > disease) for several years and have been on Prilosec (now doubled)> > with little> > > relief. I have an appointment with a Gastroenterologist next week to> > further> > > evaluate this disease and find a better treatment. GERD can be a> > contributing factor to lung> > > inflammation and scarring. The acid backs up in the esophagus and can> > aspirate into> > > the lungs especially while sleeping. I was tested for Sleep Apnea and> > have> > > that. I now sleep with a CPAP machine and facial mask. I am also> > medicated for> > > high cholesterol and hypo-thyroidism.> > >> > > I am a> > > single working mom living alone in small town called Grapeview in> > Washingtonstate, very close to Seattle. I have 3 adult children, a> > > daughter 29, son 23, and daughter 20. My oldest daughter lives in> > Californiaand the two youngest are still in> > > college and though they don’t live with me, they are very> > dependent on me> > > financially. My son will graduate with a> > > degree in Nutrition (to become a Registered Dietician) in June 2010.> > My youngest daughter is attending the> > > community college working towards a degree program in Medical> > Assistant.> > >> > > The kids> > > and I were terrified at first because I also had a brother (their> > Uncle) who died> > > from IPF (respiratory failure) within 4 months of diagnosis in 2005 at> > age 43.> > > He was a drug user and homeless when he came to live with me> > complaining of> > > breathlessness and severe coughing, he was being seen by a public> > health clinic> > > for asthma! He got a referral to the> > > University of Washington Medical Center in Seattleand they told him it> > was IPF> > > probably caused from inhaling chemicals. He died 2 days after coming> > home from his surgical lung biopsy; he never> > > started treatment other than being on oxygen 24/7 from day one. I> > never did look into my brothers results> > > after his death because we all assumed is was his poor lifestyle. I> > didn’t> > > think I would ever need to know any more about this disease and never> > thought> > > in a million years that I would be affected by it. Now I need to know> > more. My doc is giving me> > > a referral for further evaluation at the UWMC. I still have a lot of> > evaluations to go through before I settle for it just being IPF.> > >> > >> > > I alos started> > > seeing a private counselor who deals with terminally ill patients and> > > caregivers. I had plans for the second-half of my life and that> > changed> > > overnight. So, I am dealing with some anger and depression, but> > I’m learning how to> > > set new priorities and live each day as it comes.> > >> > >> > > I’m> > > thankful for finding this group…support, encouragement,> > understanding. Friends-in-kind...the best medicine for this disease.> > >> > >> > > C_53_IPF_5/09> > > Washington-the-Evergreen-state> > >> >> Quote Link to comment Share on other sites More sharing options...
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