COPD and Emphysema: Want to connect with others

Posted by redsox @redsox, May 29, 2018

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

@colleenyoung

Hi @janrn1, you'll notice that I moved your message to an active discussion where you'll meet others living with COPD like @catcatanzaro60 @fracturedd @marczappa @bb729 @jgpolachek @mrbill @sews and more.

Jan, tell us more about you. How long have you been living with COPD? Are you currently on oxygen? What does life look like for you these days?

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I was diagnosed in August 2015 while hospitalized. I have extremely severe emphysema and am waiting for other test results. I am feeling lousy and think I have at least 1 Dr who is listening to me. After many ct scans, 1 with contrast and 1 without I am clear for Pneumonia and a Pulmonary Emboli. I just started Augmentin, prednisone 15 mg, and budesonide through a nebulizer. I am grateful to be here with you all. Thanks, Jan

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@merpreb

@erasmus– Welcome to America and Mayo Clinic Connect. It must be scary and frustrating to be so far from medical help. We are not doctors or medical professionals We are patients helping other patients with similar difficulties. We can't give you any medical advice. I suggest that you might call your pharmacy with questions regarding dosages. Also perhaps, see if you can call and speak with your doctor.
Here is an explanation regarding nebulizers.
Nebulizer treatment works by atomizing liquid medicine into an inhalable gas form, which can then be easily breathed in by the patient as they wear a nebulizer mask. Nebulizer medicine also dissipates into the lungs faster, so it can enter the bloodstream more quickly to provide relief as fast as possible. So in short, your nebulizer is a delivery system for medicine that was prescribed for your problem. Are you experiencing more discomfort, pain or difficulty breathing? Do you think that liquid has filled your lungs out more since your last procedure?

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Hi Merry, I am experiencing sob after my nebulizing treatment with budesonide This is a new medication for me and I also started on 15 mg od Prednisone. Could it be to much? Just looking for someone who shares this experience..

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Hi Jan,
Glad you are here as well. Has the Budesonide had any affect on your blood pressure or heart rate? I had sob after nebulizer treatment. Is was in rehab center when it happened. I just sat quietly for awhile taking deep breaths and it did go away. Once they loaded me in ambulance and carted me from rehab to hospital. That's when they found buildup of liquid and had to drain it. I finally told them we should try nebulizer treatment as needed. That seemed to help me. Now I just use rescue inhaler when needed. Which is maybe once a week.
Keep up the fight & Best Wishes,
Mr. Bill

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@janrn1

Hi Merry, I am experiencing sob after my nebulizing treatment with budesonide This is a new medication for me and I also started on 15 mg od Prednisone. Could it be to much? Just looking for someone who shares this experience..

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Jan I have not had your experience. You would have to ask your Dr. why he prescribed Prednisone. Are you on a dose withdrawal or take 25 mg. daily? Prednisone will help with swelling. Mr. Bill asked good questions.

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@waterboy

Red…I am at the border of mod/severe. 48% lung function. 68 yrs old, male. I use 2L O2 at night, use a nebulizer (covered under part B), meds are Brovana x2 and ipratropium bromide x4, and use albuterol prn (also under part B).
I vol for clinical trials when avail at Mayo, they aren't so scary. I am using respiratory therapy and try to remain positive. Just remember "I have COPD, but COPD hasn't got me."

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How often do you use the nebulizer? Do you use it with albuterol or saline? Thanks

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When I was in hospital and then rehab I was given 2.5 mg albuterol sulfate, or 5 mg Ipratopium Bromide mixed with 3mg albuterol sulfate. This was 4 times daily. However, in both hospital and rehab respiratory therapist sometimes only showed up twice a day. Not often, but often enough to make me wonder. Seems there was another mix containing the drug Duoneb, which I think is the same as Albuterol, but not sure. You may want to try the University of Google and see if they can explain the different drugs.

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@waterboy

Red…I am at the border of mod/severe. 48% lung function. 68 yrs old, male. I use 2L O2 at night, use a nebulizer (covered under part B), meds are Brovana x2 and ipratropium bromide x4, and use albuterol prn (also under part B).
I vol for clinical trials when avail at Mayo, they aren't so scary. I am using respiratory therapy and try to remain positive. Just remember "I have COPD, but COPD hasn't got me."

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What kind of stuff do you volunteer for at the Mayo Clinic do they have stem cell research I have confessed, very bad I just want to live very badly I'm open to qualify for the Zephyr valve but I'm not sure if that's going to even happen

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@rogereddy

What kind of stuff do you volunteer for at the Mayo Clinic do they have stem cell research I have confessed, very bad I just want to live very badly I'm open to qualify for the Zephyr valve but I'm not sure if that's going to even happen

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I'm sorry it was supposed to say I have emphysema very badly

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@rogereddy

What kind of stuff do you volunteer for at the Mayo Clinic do they have stem cell research I have confessed, very bad I just want to live very badly I'm open to qualify for the Zephyr valve but I'm not sure if that's going to even happen

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@rogereddy @colleenyoung @merpreb Your post caught my eye because I just had my routine CT scan done last week and she pointed out areas where I have some emphysema. I'm not sure of the answer to your question, but I have copied in Colleen and Merry who, as moderators, usually point us in the right direction with our questions.

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@rogereddy

What kind of stuff do you volunteer for at the Mayo Clinic do they have stem cell research I have confessed, very bad I just want to live very badly I'm open to qualify for the Zephyr valve but I'm not sure if that's going to even happen

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Hi @rogereddy, welcome to the Lung Health group.

Regenerative medicine (stem cell therapy) for COPD is still in the research phase. Do use caution about promises made by some clinics.

To help people learn more about the proven therapies and the promise of developing therapies, Mayo Clinic offers a free telephone consult service. When you call the consult service, they will tell you about the availability of approved stem cell therapy at Mayo Clinic and elsewhere, and for what conditions. You can learn more about the Consult Service here http://www.mayo.edu/research/centers-programs/center-regenerative-medicine/patient-care/clinical-services/regenerative-medicine-consult-service.
Or call 1-844-276-2003 to speak with one of our experts.

You can read more in this discussion:
– Stem Cells / Regeneration https://connect.mayoclinic.org/discussion/stem-cells-regeneration/

You mentioned that you are open to considering the Zephyr valve. Is this a treatment option available to you?

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