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Posts (28)

Mar 3, 2017 · Pulmonary Fibrosis* in Lung Health

I’ve been on Esbriet going on my third year, on one or two occasions I did have some sun sensitivity (while golfing) but wearing a hat cured that. My biggest problem is the acid indigestion (or heart burn) I get from taking it (9 capsules a day). You should eat before taking it, but for me the one and only sure thing I can do to alleviate that side effect is a shake with a banana in it. Whether it be a half or whole banana. I mix it with milk and my protein powder. Other than that I haven’t had any of the other side effects. it is a very expensive medication, because of it being fairly new still. Have to wait for the patent protection runs its course before the price will come down.

Feb 28, 2017 · Pulmonary Fibrosis* in Lung Health

cold weather, high heat, and humidity I have found decreases my breathing capabilities. This is the first year I have gone to Florida for the winter (Live in Michigan) to get away from the cold with my condition. To start off, at least I can walk outside without a mask and not immediately begin my coughing spasms (something I did at home even with wearing pulmonary weather masks). The warm weather here doesn’t cause the “particular” problem with me. When the humidity climbs and begins to rain it challenges me a little more. I don’t know if the atmospheric pressure has any bearing on my breathing and coughing. I suppose I could begin a journal to find out, but never the less, it is what it is for me. I feel for you and wish you the best of luck.

Feb 28, 2017 · Pulmonary Fibrosis* in Lung Health

Hi Colleen,
FYI the doctor has to prescribe the rehab for insurance coverage. In addition if you’re on medicare you only get so many weeks of rehab covered. I have had pulmonary rehab on two separate occasions in a two year period. It consisted of watching several videos of pulmonary (issues) on breathing properly to get the best use of my lungs. I did some light weight training, walking and biking (at a snails pace) to start with so they could measure where I’m at in my lung capacity. From there we progressed in intensity to get me to my optimum breathing without O2 (in my particular case). Several people did similar rehab routines but with O2. Upon completion of my routine they would use a percussion tool to vibrate my back and loosen the sputum. I found this to be quite helpful. The reason I had stopped the first time is that I fractured a rib coughing and it was to painful to do almost anything since I coughed so much. It took months for it to heal where I could go back to rehab. On the second time around they used the hand cupping method on my back to loosen the sputum, which (I think) wasn’t quite as effective as the percussion tool. They were somewhat apprehensive about me pushing myself to the limits to where I’d get winded and start coughing. I understand that and that was why I discontinued my rehab for the gym. I saw a few patients who started rehab on my first time around and they could barely walk even with the assistance of a walker. When I went back the second time I was astounded at how much better the patients were and the progression they made. Where I live there aren’t many pulmonary rehab places around and the closest location was a hospital with a waiting period to even get on the list for rehab, once on the list there was a waiting period before actually being called for treatment. Talking with former patients of that hospital rehab, they told me it was a group instead of individual rehab and it consisted mainly of stretching and a little bit of useless exercises. I happened to find a private one near me that just opened for business, visited it and called my rehab connection at my pulmonary clinic to get the business approved for treatment and referral. Lucky me huh? I have since continued on by pushing myself to go back to the fitness club for working out, as the rehab posed not enough challenge for me. Bottom line, I recommend doing some rehab whether it be clinical or on your own (just be aware of your limits). I use my portable oxygen tank to help me recover between sets on my weight lifting and have made acquaintances just out of the curiosity of me working out with the aid of oxygen, and my recurring cough when winded. They are truly concerned for my well being, yet supportive of my regimen after finding out my condition. Hope that helps in explaining my experience with pulmonary rehab.

Feb 25, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

thank you Pam, IF I do have MAC I guess I’d just as soon deal with what comes with the meds than cough like I do.

Feb 25, 2017 · “Harmonica therapy” for chronic obstructive pulmonary disease in Lung Health

Kate, I have seen your reference to one of my posts, about adding albuterol to my nebulizer, to my understanding “that” is what the nebulizer is for, albuterol. I think I tried to make it clear that the albuterol helps bring up the sputum, but my doc prescribed me SODIUM CHLORIDE to “add” to my albuterol to see if it helped me bring up more of the sputum that lies in my lungs. Because I have constant and violent coughing we are trying to find out the “why” I have that. The sodium chloride was a thought to see if bringing up more sputum would decrease my coughing. Although it definitely makes one cough while inhaling it it hasn’t returned the results we were hoping for. Then after reading more about MAC and doing my research I dropped my doc a line to see what he thinks. We’ll see how that works out. On another note, I think most of us know there are good, bad, and indifferent doctors that treat people for whatever patients have, but to go out on a limb and slam them on a public forum is disrespectful (in my opinion) to many of them for their dedication and desire to help others. Suggestions like that can create hostility (as well as confidence) in a doctor patient relationship. We don’t need doctors coping an attitude with us because of suggestions planted in ones mind (conscious or subconscious). One or two bad experiences doesn’t put them all in a box of questionable physicians for them to prove their worth. I think you get my drift.

Feb 25, 2017 · IPF, COPD, /MAC? in Lung Health

I’ve been following posts on IPF primarily although I have also been diagnosed with COPD, and bronchiectasis. I have been reading about people having MAC and decided to do a little research on it. There is a lot out there on it and I would suggest starting with maclungdisease.org
I show only a couple of symptoms of it, however my coughing and sputum symptoms are quite prevalent with my personal condition. I’ve brought this to the attention of my Pulmonologist at the Cleveland Clinic to see what he thinks, as we both are wondering why I cough the way I do. I am waiting for his reply to see how we might go forward with this new information.

Feb 25, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi Pam, I have copd and IPF cough violently and all day. My doc’s tell me I shouldn’t be coughing like that with my condition. So I ran across the MAC posts and did some research on it. It said it takes 15 to 18 months on three types of meds to cure the MAC although a few weeks to a few months the patient could see results. They said that the patient needs to show no MAC in the sputum samples for 12 months before they consider it cured. They emphasized not to shorten the medication time because if it comes back it becomes somewhat a super bug, and takes the same treatment with additional medication. The side effects of the medication don’t sound pleasant, did you experience any? I’ve brought the MAC subject to the attention of my doc at the Cleveland Clinic, and we”ll see where that goes. Thanks for the info.

Feb 24, 2017 · Traveling and flying with oxygen in Lung Health

I saw a post on someone flying with oxygen, through a little surfing took me to this site

http://www.aeromedic.com/news/uncategorized/3-steps-fly-portable-oxygen-concentrator/

so it looks like tanks are out of the question, and ONLY concentrators are allowed. There’s a little preparing to do before you fly, so I’d suggest you start early. Just thought you’d like to know.