@vincestravino
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Vince Stravino replied to the topic How did you handle the first time your disease got worse? in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 weeks, 3 days ago
When my FEV and DCLO dropped I panicked but then I had a course of pulmonary rehab and my physical and mental status both improved. I also got checked for sleep apnea and now sleep and awaken better. I felt better sharing and listening to others in the support groups(I am in four!) After my scare I also sought meds from my family doc for anxiety…[Read more]
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Vince Stravino replied to the topic ILD PF and terminal prognosis in the forum Diagnosis Information and General Questions 3 weeks, 4 days ago
I have had symptoms, and xray changes of IPF since 2016 but official dx made 2021 by local pulmonologist. I then saw Superstar professor at regional center who thinks ILD. I’m 87.5 years and coping decently with only nighttime 2 liters oxygen. I have only minimal restriction with stairs,hills, and exertion(no oxygen). I have a contributing cause…[Read more]
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Vince Stravino replied to the topic Decreasing DLCO……..40-35 %in a month in the forum Join the Discussion: Welcome to all PF/IPF Patients 6 months, 3 weeks ago
FYI-Unclear if you mean that your DLCO dropped from 40% to 35% or if a total drop of that amount occurred.I had DLCO of 55% nine months ago with a repeat 2 months ago of 68% !
Lab error? I suspect all tests are variable but the trend and our symptoms and pulmonary function tests must be considered too. A Second opinion pulmonologist suggested to…[Read more] -
Vince Stravino replied to the topic Pirfenidone from India in the forum Esbriet (Pirfenidone) 6 months, 3 weeks ago
OOPS !! My typo-lowest dose made in India but sold by above pharmacy is 200 MG. not my 100 mg. listed in the second sentence above so the math is correct.
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Vince Stravino replied to the topic Pirfenidone from India in the forum Esbriet (Pirfenidone) 6 months, 3 weeks ago
FYI- I am not on anti-fibrotic meds(yet) and I have PF one year. I have been buying meds from canadapharmacyonline.com for about 20 years. Only one shipment of my meds confiscated at the border by the FDA thugs but the pharmacy sent another shipment no charge.
They offer the generic Esbriet 90 tablets 200 mg. for $158 or 4 tabs would cost $632.…[Read more]
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Vince Stravino replied to the topic Episodes/ flares in the forum Diagnosis Information and General Questions 7 months, 2 weeks ago
I have Interstitial Lung Disease-one of many variants of Pulmonary Fibrosis.My Flares are intense bronchitis/pneumonia, productive cough, fatigue, but I usually do not have significant muscle pain,fever,or neck pain. I have an old arthritic neck with aches but never with a flare.My flare lasts 3-4 weeks and the most effective treatment is cortical…[Read more]
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Vince Stravino posted an update 7 months, 2 weeks ago
I am new to the diagnosis of IPF/interstitial Lung disease and still learning. I am seeking that “magic bullet” to overcome fatigue and dyspnea on exertion. My 2 questions to my busy pulmonologist this week are 1-I read Sleep apnea is common in many IPF patients, and might(?) cause daytime sleepiness and tiredness.
2-my Pulse Ox is low during the…[Read more] -
Vince Stravino became a registered member 7 months, 3 weeks ago