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 O2 Support & Lung Function Testing
 Lung Function %
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SandyIn
Rookie

20 Posts

Posted - Nov 27 2018 :  12:11:34 AM  Show Profile  Reply with Quote
I think the last time I was on site, until earlier today, was back in 2016 when I was inquiring about the TTOT delivery system. I never was able to get it. So now, I not only still have heavy nasal congestion, I have a perforated septum. Which means I will now have heavily scabbed and encrusted nostrils. Really helps with the oxygen flow. NOT. Makes me wish I had read some 'sticky notes' earlier and followed at least one of Dave's '12 Steps To Miracle Cure' (?). The one about being my own advocate. After seeing my new pulmonologist today, my nose is the least of my worries.

For the last 15 years, even though I was on O2 24/7, I wasn't having that much trouble with my COPD. I was in the hospital one time for a flare-up. A couple other milder infections I cleared up at home and that about covers it. Of course, I gradually had been cutting back on my activities but I was still doing some of the things I enjoyed. Albeit, most of those activities didn't involve much action on my part.

Then about six months ago something changed. I started having a real problem getting enough air even with increasing my liter flow. As my old pulmonary doctor has moved into sleep study, I had to go to a new doctor. He ordered a CT scan and took me off Advair and Spiriva because he didn't think I was capable of inhaling them deep enough. He put me on Duoneb and Pulmicort. I couldn't tolerate the Pulmicort...made me cough excessively and wheezing. Today was my follow-up. Ct scan shows my left lung is done and I have 23% function in the right. He even said after viewing past CT's he has no idea what could have caused my left lung to go so fast. New meds to go along with Duoneb is Brovana and a 30 day taper of Prednisone.

At 23% lung function, what I can expect? I realize I am at stage 4......probably a ways past that. Any suggestions to if there is anything more I can do to drag this poor sick lung along behind me for as long as possible. I have to say, I am in more shock today than I was in 2009 when I was told I had lymphoma.

tsainta
Contributing Member

USA
1866 Posts

Posted - Nov 27 2018 :  12:50:25 AM  Show Profile  Reply with Quote
I have never heard of lung capacity measured by a CT scan. Or am I reading something wrong?

Tony-CA

Take care of business or business will take care of you.
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SandyIn
Rookie

20 Posts

Posted - Nov 27 2018 :  01:46:36 AM  Show Profile  Reply with Quote
Tsainta, that is what my doctor said. He pulled up the CT scan and was showing me all different angles of it. The left lung was just all black looking from all directions and the right lung had a few little spots that looked like there might be life left in it. From what I have read from his profile, education, experience, and published papers he is supposedly a very qualified pulmonary doctor. Do you think I should be questioning it?

Sandy

The Trick Is To Just Keep Breathing
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Sokcap48
Senior Member

USA
904 Posts

Posted - Nov 27 2018 :  4:50:02 PM  Show Profile  Reply with Quote
Did you get a complete PFT? How do you know one is “ done “ and one at 23%? — start working your butt off! The more you do the more you will be able to do.
I was still hiking mountains at 19% although I was using a lot of 02.

Pursue Double Lung Transplant :-)

Need info PM me. Be more than happy to walk with you the whole process.

Paul-Ut
The Journey Continues.
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Jocopd
Member

USA
160 Posts

Posted - Nov 27 2018 :  4:55:28 PM  Show Profile  Reply with Quote
Did he do the other tests for pulmonary function? I would ask for those to be done also. After all many of the test results are based how we breath in and out and what % change before and after a dose during the test.
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SandyIn
Rookie

20 Posts

Posted - Nov 27 2018 :  6:41:28 PM  Show Profile  Reply with Quote
Sokcap48, The first thing I will be doing is...I am going to contact my doctor and find out just where he came up with the %. It has been a few years since I had the PFT testing. In fact, it has been a few years since I have had a six-minute walk. I guess I am not a very good advocate for myself. I always thought doctors were all very knowledgeable and on their toes. Maybe I am giving them too much credit. Will start asking more questions. As far as being busy, I have always pushed myself to keep doing. It is just since this last episode I have had to step back.

Sandy

The Trick Is To Just Keep Breathing
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SandyIn
Rookie

20 Posts

Posted - Nov 27 2018 :  6:55:02 PM  Show Profile  Reply with Quote
Jocopd...you are right about the way we breath affecting our test results. I wish everyone knew this and the proper way to inhale and exhale with force. In the beginning of my journey, I had the full battery of the PFT testing. The pulmonary tech said I did fine. When I was qualifying for SSD, I was sent to a different facility and tech. I had a horrible time doing it the way he wanted me to. In the end, I he tought me how to do it properly. After that, when I exhaled properly, I actually moved air instead of a bunch of wheezing noises. Some techs are not savy to this.

Sandy

The Trick Is To Just Keep Breathing
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Sokcap48
Senior Member

USA
904 Posts

Posted - Nov 27 2018 :  7:22:10 PM  Show Profile  Reply with Quote
Sandy- if you will fill out your contact info on your profile page I will try and contact you with some transplant info.
Paul

Paul-Ut
The Journey Continues.

Edited by - Sokcap48 on Nov 27 2018 7:22:55 PM
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SandyIn
Rookie

20 Posts

Posted - Nov 27 2018 :  9:28:12 PM  Show Profile  Reply with Quote
Paul-UT, you do not know how much I would appreciate that. The sad thing is I have already been down that road. Because of my heart attack in 2003 and the fact I have had 3 stents put in at different times in arteries, I have been told by local transplant teams I am not a candidate. Now, if my heart gets bad enough to need a new one, I might be considered for heart and lungs. Go figure. Thanks for the offer.

Sandy

The Trick Is To Just Keep Breathing
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Sokcap48
Senior Member

USA
904 Posts

Posted - Nov 28 2018 :  3:06:47 PM  Show Profile  Reply with Quote
Sorry to hear that! Yes they are pretty picky about that heart condition. Yes the heart/lung makes perfect sense. New heart can take care of new lungs. Old heart my give out or not even make it thru surgery. Keep on keeping on. Walk walk walk. Plus arm and leg exercise every other day! Stay as strong as you can as long as you can.
Warm Regards
Paul

Paul-Ut
The Journey Continues.
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Diane545
Member

USA
301 Posts

Posted - Dec 04 2018 :  09:55:05 AM  Show Profile  Reply with Quote
I too am curious how the CT scan showed your results. I have emphysema and the scan shows that but had to do PFT tests to get a more accurate assessment of lung function & damage. Please keep us posted. Thanks
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PennyPA
Contributing Member

USA
5905 Posts

Posted - Dec 19 2018 :  8:29:34 PM  Show Profile  Reply with Quote
Sandy, how'd the pred and brovana routine go? Just an FYI...I was at 21% for several years before I had my LVRS. I,too, would like to know how he determined your percentage from a scan.

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Jan-KS
Member

USA
91 Posts

Posted - Jan 26 2019 :  01:20:12 AM  Show Profile  Reply with Quote
As far as how well you'll get along at 23% - I think that depends. That's exactly where I am. A few years ago I was ill and my lung function (by PFT) the year before was 36% then after the illness I was and have since, been testing at 23% - And the change was so sudden I knew something bad had happened - I could feel that 13% loss, were before I'd only lose 1 or 2% a year and couldn't tell the difference.

I agree that all you can do to get the most out of your 23% is exercise. I never have felt that I have to exercise because I spend at least 30 minutes a day straight on housework. Before I did that I was virtually bedridden - so it has helped a lot. I'm not fond of walking outside so housework provides a certain amount of activity - muscle stretching, arobic, strength etc.

What I did notice after it first dropped was how severe my desaturation gets with heavy exertion - before it didn't go below 90 but at 23% I must have O2 or it will drop to the mid 70's just sitting still without it, or REALLY drop to 60% or lower (I did this by accident) by exerting myself without realizing my O2 wasn't on - I couldn't think straight, felt like I was going to pass out and also caused a very minor heart attack in my left ventricle - not from blockage but it's just that one wall of my heart doesn't stay in sequence with my lungs anymore. Luckily I have excellent arteries and no other heart issues so it had no effect of my overall heart function. I think the lower your FEV1 is the more you have to start being careful about tubes disconnecting, and about overexertion because you'll feel the effects much harder.

Jan C
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