Guest guest Posted August 3, 2009 Report Share Posted August 3, 2009 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 Washington state, very close to Seattle. I have 3 adult children, a daughter 29, son 23, and daughter 20. My oldest daughter lives in California and 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 Seattle and 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_5/09Washington-the-Evergreen-state Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2009 Report Share Posted August 3, 2009 Hello , I can relate to your story so well also. I also have GERD, attributed to Crohn's actually, but reflux none the less - and sleep apnea (also associated with PF according to some of the sessions I went to at ATS). On those, I'm not sure which comes first, the chicken or the egg. I was struck that at the lung doc. meeting GERD was on everyone's radar and discussed widely. At the GI meeting, they talked about GERD, of course, but not one mention was made about it's connection to lung disease. Sometimes docs work in such silos and they don't look across organ systems for connections often enough. Hermansky-Pudlak Syndrome 02 / PF 06 Personal blog: www.heatherkirkwood.blogspot.com >> 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) â€"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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