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Jocopd
Member

USA
198 Posts

Posted - Sep 18 2019 :  08:56:15 AM  Show Profile  Reply with Quote
About 5 years ago when I was first diagnosed by my pulmonary doctor as severe level 4 COPD.

I was given Advair and Spiriva with pro air and combievent rescue inhalers and duo for nebulizer.

The Advair and Spiriva made a world of difference within a week. I could walk without a walker and was put on oxygen at night. The rescue inhalers did nothing and neither did the nebulizier. Si I did not take those.

Now I understand the disease just gets worse but I am now on oxygen almost 24/7 - rescue inhalers and nebs still do nothing. I have a hard time breathing most days. Its like the Adviar and Spirivia do nothing anymore.

When I ask my pulmo about my breathing being so bad he just says well your severe level 4 and thats the way it is.

My question is should I mess around with changing meds or is this the progression of the disease?

I can feel a huge difference between 5 years ago and now. When I mentioned this to my doctor he makes me feel like he does not understand there is a difference between then and now. He pushed lung transplant 5 years ago and still does.

I still do pulmonary rehab twice a week but now with oxygen.

Just looking for some opinions from the group.

Sandy9s
Member

USA
495 Posts

Posted - Oct 10 2019 :  2:58:42 PM  Show Profile  Reply with Quote
COPD is a weird disease! I was worse 2 years ago than I am now! I was coughing up junk about 10 times each day, with wheezing inbetween. My Pulm. found "wheezing" at all Dr. Appointments. Then 1-1/2 years ago I got a new hip ------- helped my hip, but sure didn't do anything good for my wheezing and coughing!

About 12 months ago I started using a SmartVest (percussion vest) x 3 times per day. Then about 9 months or so ago, I started taking Azithromycin 250 mg. on M-W-F each week. Each month I have had less and less coughing.......very slowly the coughing became less and less. I am now now noticing I can go about 2 days with no coughing at all, then a day of a few coughing spells with mucus. When it's coughed up, I feel good again!

I gauge my mucus by "how high of a note can I sing?" All last winter I could not get above a middle G. My quartet Lead had to switch notes with me -- I could not get an Ab out at all (the next note). So during the past several months now, I have crept up to an Ab, then a B, then a Bb and the last couple of days, I can hit a C. AMAZING!!! My voice has gotten so much more clear -- just like it used to be!!! The mucus is almost gone in my whole respiratory tract and head, it seems. My Chorus has noticed the difference in how strong my speaking voice has become (I am the Director).

Getting out of the shower with my oxygen on -- set at 2-1/2L, I had been registering a 77 or 79. I should have been pushing the liters up to about a 4, but I was too lazy. Now ---- when I get out of the shower at my setting of 2-1/2L, I am at 88 saturation!

With so much less mucus, I am feeling so much healthier and stronger. I also do Pulm. Rehab x 2 times a week, but I don't attribute it all to this. It's got to be the SmartVest and the Azithromycin!

None of my other medicines are changed: Duo-Nebs x 2/day; Combivent Inhaler x when needed; Advair 250; Incruse Ellipta.

My FEV 1 has been 29 the last couple of times.......am due to have another one at my Rehab Facility one of these days. I am now really curious!! I'll bet I am better!

Probably I am what the doctors would call "stable copd." My Pulmonologist scheduled my next appointment at 6 months. (usually they are 3 months!)

But I feel so much better without constant heavy duty mucus!!!!! So I am saying to my friends that "I am better this year than last year!"

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micah35
Member

66 Posts

Posted - Oct 10 2019 :  5:50:49 PM  Show Profile  Reply with Quote
What great, encouraging news, Sandy!
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