COPD/ Emphysema

Posted by redsox @redsox, May 29, 2018

Confused by PFT so much to absorb ! What are the treatments for Mild, Moderate and Severe .

Liked by debbmol62

@merpreb

@joelars– I know that you are frustrated but I agree with @johnbishop that you should check with your doctor to see if you should even try a salt inhaler. There might be other things going on that would be irritating, and you don't need that at all. Have you decided anything about this as yet?

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Tried salt inhaler, did nothing as did all the inhalers, Etc that I have tried in the last 3 years. Looked at my doctor and said" I keep trying all of these remedies & nothing works, I wish one of you would level with me & tell me if I'm going to get better-She looked me in the eye & said "you will never get better" Quit the sprivia
& went back to beer!!!

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@boredsilly

Tried salt inhaler, did nothing as did all the inhalers, Etc that I have tried in the last 3 years. Looked at my doctor and said" I keep trying all of these remedies & nothing works, I wish one of you would level with me & tell me if I'm going to get better-She looked me in the eye & said "you will never get better" Quit the sprivia
& went back to beer!!!

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Salt did nothing for me ,had a lamp by the bed, waste of money. Am at stage 4 and on Trelegy, Proair, Combivent and 10mg prednisone, plus 3L O2. Currently stuck at the Mayo Clinic Jacksonville because of the hurricane, no flights out, waiting to have a lung biopsy done. Looks like Dorian will miss us. Then it can happen this week.

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@djallan I did a little more research and it appears there is no scientific research or studies. It appears from the few articles I did find from MD's that it is popular in Europe and result from a few studies should positive results. From what I read it seems it can't harm you (with that being said there is always the possibility it can) I have the bed lamp also and likewise no different but I am going to try this salt inhalation and see if anything happens there. I tired trelegy and didn't seem to be any different. Currently on Tudorza , Symbicort, albuterol, Proair, 2.5L O2, 15 mg prednisone (going on 20 years for UC but does help me breathe easy) I was on 30 but could only get down to 15 before I could feel the symptoms getting worse. I also take 1200 mg twice a day of Mucinex. Occasionally do the flute value. Stay safe out there the Dorian track seems to change every few hours. Good luck on the biopsy. Breathe easy.

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@merpreb no, I didn't give it much thought. I'll ask my pulmonologist when I see him next year (He didn't feel I needed a new appointment, I made one anyway).

Frustrating is too mild a word. I just finished a 6k run. Perfect weather. I started at about 9 minute pace. It felt a little slow but comfortable. Within a mile I hit the emphysemic wall. 9 minute pace is normal for an average runner-with emphysema it's too fast. I slowed down and by the finish I was "running" 14 minute pace feeling like I'm running through ankle high water. I ended at 11:30 mile average, overall. Several years ago, I would have been happy with that time. Now, I'm disappointed that, considering my lung damage, this is as good as it gets.
I've seen a lot of improvement in lung function over the last 13 years so I'll keep pushing-if I can't improve anymore at least I can slow the decline, I hope.

Every 3-4 months I call the Mayo researcher who sets up the clinical stem-cell trials (for lung damage) hoping they have something for me. The last 2 years they did not have a suitable trial. I'm due to make the next call in October. Persistence is my greatest ally.

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@boredsilly

Tried salt inhaler, did nothing as did all the inhalers, Etc that I have tried in the last 3 years. Looked at my doctor and said" I keep trying all of these remedies & nothing works, I wish one of you would level with me & tell me if I'm going to get better-She looked me in the eye & said "you will never get better" Quit the sprivia
& went back to beer!!!

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@bored silly Please tell me the doctor didn't really tell you that.

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@bb729

@djallan I did a little more research and it appears there is no scientific research or studies. It appears from the few articles I did find from MD's that it is popular in Europe and result from a few studies should positive results. From what I read it seems it can't harm you (with that being said there is always the possibility it can) I have the bed lamp also and likewise no different but I am going to try this salt inhalation and see if anything happens there. I tired trelegy and didn't seem to be any different. Currently on Tudorza , Symbicort, albuterol, Proair, 2.5L O2, 15 mg prednisone (going on 20 years for UC but does help me breathe easy) I was on 30 but could only get down to 15 before I could feel the symptoms getting worse. I also take 1200 mg twice a day of Mucinex. Occasionally do the flute value. Stay safe out there the Dorian track seems to change every few hours. Good luck on the biopsy. Breathe easy.

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Thank you so much

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@joelars

@merpreb no, I didn't give it much thought. I'll ask my pulmonologist when I see him next year (He didn't feel I needed a new appointment, I made one anyway).

Frustrating is too mild a word. I just finished a 6k run. Perfect weather. I started at about 9 minute pace. It felt a little slow but comfortable. Within a mile I hit the emphysemic wall. 9 minute pace is normal for an average runner-with emphysema it's too fast. I slowed down and by the finish I was "running" 14 minute pace feeling like I'm running through ankle high water. I ended at 11:30 mile average, overall. Several years ago, I would have been happy with that time. Now, I'm disappointed that, considering my lung damage, this is as good as it gets.
I've seen a lot of improvement in lung function over the last 13 years so I'll keep pushing-if I can't improve anymore at least I can slow the decline, I hope.

Every 3-4 months I call the Mayo researcher who sets up the clinical stem-cell trials (for lung damage) hoping they have something for me. The last 2 years they did not have a suitable trial. I'm due to make the next call in October. Persistence is my greatest ally.

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@joelars– Good morning. It's very important to treat your COPD and emphysema because if you don't then it most likely lead to more complications and worse symptoms. I have a good feeling of what you want, not to have any of this at all, to appear robust and free to do just about anything. I want that too, but in reality, it's just not realistic. You are doing supremely well with exercising the way that you are. But you have a serious lung disease, as do I. But if I do not take my inhalers than my lungs feel much worse and breathing gets harder and over time it will only get worse. You probably would have an easier time exercising if you took inhalers. I also think that your doctor is not doing you justice if he is not pushing you to treat your symptoms. I don't think that you have mentioned why you have so much lung damage. Would you mind telling me?
https://www.healthline.com/health/copd

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@djallan

Salt did nothing for me ,had a lamp by the bed, waste of money. Am at stage 4 and on Trelegy, Proair, Combivent and 10mg prednisone, plus 3L O2. Currently stuck at the Mayo Clinic Jacksonville because of the hurricane, no flights out, waiting to have a lung biopsy done. Looks like Dorian will miss us. Then it can happen this week.

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@djallan– Hello and good morning. What is this lamp that you are talking about?

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@merpreb

@djallan– Hello and good morning. What is this lamp that you are talking about?

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It is a pink Himalayan salt lamp. A large block of pink salt(crystal) with a light bulb inside it.

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@djallan

It is a pink Himalayan salt lamp. A large block of pink salt(crystal) with a light bulb inside it.

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@djallan– And what is it suppose to do?

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@merpreb

@joelars– Good morning. It's very important to treat your COPD and emphysema because if you don't then it most likely lead to more complications and worse symptoms. I have a good feeling of what you want, not to have any of this at all, to appear robust and free to do just about anything. I want that too, but in reality, it's just not realistic. You are doing supremely well with exercising the way that you are. But you have a serious lung disease, as do I. But if I do not take my inhalers than my lungs feel much worse and breathing gets harder and over time it will only get worse. You probably would have an easier time exercising if you took inhalers. I also think that your doctor is not doing you justice if he is not pushing you to treat your symptoms. I don't think that you have mentioned why you have so much lung damage. Would you mind telling me?
https://www.healthline.com/health/copd

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30 years of heavy cigarette smoking

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@merpreb

@djallan– And what is it suppose to do?

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Inhaling the salt is supposed to help with SOB from COPD. Doesn't do any good for me.

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@joelars

@bored silly Please tell me the doctor didn't really tell you that.

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Wrongo! Dr. said that!!

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@joelars

30 years of heavy cigarette smoking

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@joelars– I smoked the same way for 35 years. What happened that you are so turned off by Pulmonologists?

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@merpreb

@joelars– Good morning. It's very important to treat your COPD and emphysema because if you don't then it most likely lead to more complications and worse symptoms. I have a good feeling of what you want, not to have any of this at all, to appear robust and free to do just about anything. I want that too, but in reality, it's just not realistic. You are doing supremely well with exercising the way that you are. But you have a serious lung disease, as do I. But if I do not take my inhalers than my lungs feel much worse and breathing gets harder and over time it will only get worse. You probably would have an easier time exercising if you took inhalers. I also think that your doctor is not doing you justice if he is not pushing you to treat your symptoms. I don't think that you have mentioned why you have so much lung damage. Would you mind telling me?
https://www.healthline.com/health/copd

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Merry. Doctor gave me Trelegy and I have been doing great. I felt like I didn’t need it but then knew it was the reason I’m good. Am in Florida in the path of the hurricane but have faith and hope. No matter what life throws at us we are survivors. Stay strong. Blessings.

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