Mary Osullivan
Forum Replies Created
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I have to say,it’s happened to me 3 times. Once at the pulmonologists office. My husband jumped on the guy (verbally ) 🙂 The second time was at church….they moved way down the pew. And today it was at the movie theater! A man yelled, ” If you’re SICK GO HOME!” My husband and the other couple yelled simultaneously,” SHE’S NOT SICK!!” People are so freaked out because of this virus!!! I don’t know. Sometimes you feel like you should just stay home. It makes my husband so angry I’m afraid he will punch someone out the next time! The fear is outrageous. God help us if some [lague like leprosy comes some day. They will be killing people!! Frightening.
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I was diagnosed with pulmonary fibrosis 4 years ago. The first year I really had no symptons…not even a cough, and it was found by my pulmonologist when I went for a check up for my sleep apnea as I needed an order from a doctor to order more supplies from the insurance. You can imagine my shock at the diagnosis after the cat scan. the second year I noticed some difficulty going up inclines, but did fine if the sidewalk was even. Couldn’t run or even walk really fast without getting out of breath a lot but I attributed that to being out of shape. Began dieting and swimming in our pool and lost about 30 pounds. I thought it odd that my breathing wasn’t a whole lot better but just kept exercising and figured it would slowly improve. By the third year I was getting sick…seemed like I’d just get rid of a cold and would catch one again. I’d be back to the doctor and on antibiotics over and over. I still was not on oxygen at this point. We had planned a trip to Yellowstone Park and I cleared it with my doctor before I went. Well I caught a cold again on the plane and it went downhill from there. We got through the trip and I went back to my pulmonologist and told him I wanted a referral to Duke University. My pulmonologist referred me to Dr. Marshall there. The team felt I had an autoimmune disorder and I was put on Cellcept 1000 mg 2x per day. I also was put on Prednisone 10 mg 1x per day. I have had no side effects from either medication, but I am having a terrible time losing weight. He said I would be a good candidate for a transplant (which I am interested in) but I needed to lose 40 more pounds to have a BMI less than 30. I am having one heck of a time losing the weight now. My stats have improved a little and I’m doing well in rehab but feel somewhat pressured to get this weight off in case this disease takes a turn for the worse any day. Also…I have a terrible cough with flem constantly. I take Mucinex 1200 twice daily, but still cough. It did stop the choking at least. Any suggestions on the weight loss is appreciated. Othwr than that I feel pretty healthy. I can’t say I am ever really tired as long as I get my 10 hours of sleep! 🙂
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Hi Charlene, I am having the same difficulty as Malcolm. One line posts go through, but I have written a long post 3 times which still hasn’t gone through. UGH!!!!
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Posting is still difficult.
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Hi Charlene! I was very sick with sinus problems and infections over the last 6 months. I was on several antibiotics but it always came back. I started using the Nettie Pot daily and taking 1200 mg of Mucinex twice daily, and it is finally GONE! During these months I had a terrible cough…began coughing all day and night nonstop. Only cough drops would help. Dr. thought it was reflux. I didn’t think so because I was already on Protonix, twice daily. Went to gastro doc after doing a swallowing xray test. She changed my medication( this is much stronger!) and guess what? The cough is gone. I wasn’t experiencing any frequent burning. The doctor said you didn’t have to!!! I didn’t know that! Check on that. It’s a simple fix if that’s causing the cough. Do coughdrops help? My doc said if cough drops help then the problem probably isn’t coming from the lung. Anyway it’s worth a try.
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Is anyone having trouble posting on this site?
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You had such a tactful way of telling your father’s story, that we could all find comfort in it. I am so sorry for what you went through. I hope you are at peace knowing you did all you could do for your father. He is at peace now. Thank you for sharing with us.
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Hi Charlene and Kate! Sorry I took so long t respond but I did want to get back to you. Yes my pulmonologist did think that the Aleve contributed to the PF. He said he had 3 people in the office that were diagnosed with it that very day and the only thing they had in common with me was they took Aleve. The Napricin that’s in it is the culprit. I was taking a “therapeutic dose” as per my hip doctor’s instruction at 2 per day for years. I guess it’s kind of like smoking…not everyone that smokes gets lung cancer, but many do. Had I known I would have avoided it like the plague. Anyway, the first year the doc didn’t know I was on Aleve…and that year it increased by 25 percent. I stopped the Aleve immediately when he asked if I took it,and for the last 2 years there is no change in my x-ray that was a cat scan. So I’m pretty convinced it caused it. They did see some Hypersensitive Pneumotitis on the x-Ray. I’m not satisfied with that explanation so he’s sending me to Duke. They have not called to set up that appt. yet. I have a chronic cough that s sometimes productive, sometimes not, that noone is sure what is causing it. Been to an ENT, allergist gastro guy (reflux) and noone knows for sure. My pulmonologist thinks it’s post nasal drip, as the only thing that stops the cough temporarily is cough drops. I also am running low numbers on my oxygen levels….sitting and doing nothing 90-92. Moving around doing chores….84-87. I have to go back to my pumonologist for a walking reading as he thought he wasn’t getting a true reading cause of my dark nail polish. I believe it is a true reading. So….if my x-ray is showing no progression on the cat scan, why then have my oxygen levels dropped?? I have lots and lots of questions and hopefully Duke will be able o answer them. Robin’s post spurred e on to look at a second diagnosis, so thank you Robin!!! 🙂
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Hi Charlene! Thank you for the welcome! I was diagnosed with PF 4 years ago by my pulmonologist. It was a complete surprise cause the appt. was for sleep apnea, and that’s when he heard the Velcro sound. I had no symptoms prior to that. After the first year I went back for the breathing test and he said I had lost 25 percent of lung function. I didn’t know Napricin (sp) was in Aleve and I had continued to take 2 pills a day due to hip problems. I stopped the Aleve immediately. Two years later the fibrosis has not progressed beyond the 25 percent loss, but now they have detected Hypersensitive Pneumontitis (sp) as well. Still looking for answers. Have another breathing test with the pulmonologist tomorrow and hoping to get some answers.
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Hi Robin! I too have Pulmonary Fibrosis and also have HP. I would also like a copy of that report if possible. We did have someone in to check the air quality, but he came up with nothing. He was not an industrial hygenist. I do need to pursue this however cause I think this is the cause of my constant cough. I didn’t know the scarring wasn’t permanent either. My email is [email protected]. I really appreciate you taking the time to send us copies of this report. It gives all of us a new hope.
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Sometimes it posts, sometimes it doesn’t.