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greyfox612
Member

USA
35 Posts

Posted - Nov 30 2013 :  8:48:24 PM  Show Profile  Reply with Quote
Hi. I'm Jerry, 63 yo and was diagnosed with copd a few months ago. I quit smoking 25 years ago. My doctor said I have chronic bronchitis, and severe copd. Everything I read says I should have a cough and a lot of mucus but I don't. So I'm a bit confused.

I have noticed for the last few years that I was getting short of breath more easily. Wasn't till back surgery last Dec. and my CO2 levels wouldn't go down, I ended up in ICU for 3 day on a BIPAP machine. Talk about fun! Anyways, I keep searching the net for info, and finally decided to join this forum.

I should mention I had a triple bypass in 2002. And have had allergies and asthma since childhood. I take Qvar twice a day and albuterol as needed. Also I now use supplemental O2 at times.

Thank you.

CarolCA
Contributing Member

USA
3211 Posts

Posted - Nov 30 2013 :  10:46:27 PM  Show Profile  Reply with Quote
Yes, if you have chronic bronchitis you should have mucous more often than not but you could have straight Emphysema and not have a cough. You can have one or the other or both. Did you get a copy of your pulmonary function test? and do you use an oximeter to see when you need your O2? You don't really say how you are doing but there are other meds for COPD. It sounds like you are being treated more for Asthma than COPD. Are you seeing a specialist?
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greyfox612
Member

USA
35 Posts

Posted - Dec 01 2013 :  08:10:22 AM  Show Profile  Reply with Quote
No I didn't get a copy of my pulmonary function test. I'm seeing a pulmonologist for this. I use an oximeter. At rest I run in the low 90s but as soon as I get up to do much of anything it drops to the mid 80s. If I use O2 at rest it goes up to 97-98% on 2L. I've read that it's best to use the supplemental O2 as much as possible. When I go out I always take my portable tank.

I go back to the pulmonologist in Feb. and will have lots of questions. My last appt. when I was told I have copd, I was too dumbfounded I guess, to know what to ask.
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jmrommes
Contributing Member

1228 Posts

Posted - Dec 01 2013 :  09:15:03 AM  Show Profile  Reply with Quote
COPD is an umbrella term that includes both chronic bronchitis and emphysema. Sometimes docs don't use emphysema because it scares people, but the truth usually is that those of us with COPD have both, or least elements of both. I wouldn't worry so much about the lack of mucous: enjoy it! At least that part of your disease isn't rearing it's ugly head and causing you problems now. If you're really concerned about the diagnosis, ask for a CT scan. That will show whether or not there's an emphysema component as well as the CB.

Jean

Exercise not only lets me live, it enables me to have a life.
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greyfox612
Member

USA
35 Posts

Posted - Dec 01 2013 :  10:53:31 AM  Show Profile  Reply with Quote
I will do that at my next appt. Thank you both for your replies. Any thoughts on using supplemental O2 when at rest? I read so many conflicting things on the net about this. Sometimes I think I read too darned much, but I've always felt knowledge is much better than ignorance.

One other thing I have always wondered is if having whooping cough at age two had anything to do with my breathing difficulties throughout my life. One more thing I have forgotten to mention is I have a paralyzed left hemidiaphragm. I think this has some to do with my doing poorly on my pulmonary function test, and my doctor agrees.

Thanks in advance,
Jerry
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PennyPA
Contributing Member

USA
4731 Posts

Posted - Dec 01 2013 :  11:46:52 AM  Show Profile  Reply with Quote
If your sats go to the higher 90's with 2L at rest, chances are good that you don't need O2 while sitting around. Our bodies don't store O2 so what you see on your pulse ox is where you are as far as O2 goes. Why not call your pulmos office and ask them to send you a copy of your pft. Some doctors also include asthma under the copd umbrella and your doc may have well done that.

And yes, a paralyzed left side of your diaphragm would make a lot of difference in your breathing capabilities and your pft since without that muscle, we don't breathe. Does your doctor know what caused that paralysis?

****************************************************************

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS





Edited by - PennyPA on Dec 01 2013 11:47:53 AM
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greyfox612
Member

USA
35 Posts

Posted - Dec 01 2013 :  11:57:39 AM  Show Profile  Reply with Quote
No they have no idea what caused the paralyzed diaphragm. It showed up on a fluoroscopy I had in the 90s, after a really bad chest cold. It just wouldn't go away. That was when they determined I had asthma again. I'd had it as a kid but went many years w/o it.

I may call my pulmonologist and ask for a copy of the pft. What should I look for in it?
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CarolCA
Contributing Member

USA
3211 Posts

Posted - Dec 01 2013 :  1:16:18 PM  Show Profile  Reply with Quote
Look at the FEV1 first, then the FVC, RV and DLCO.
Read this over and it will give you some idea of the test and the why these numbers are important.

http://www2.nau.edu/~daa/lecture/pft.htm

It is hard to know when sitting about the O2. I think I am using it a lot when I could get by without it because sitting I am in the high 90's but since I am up and down a lot I just leave it on cause I know my sats will go down. I do feel a little like I might be getting lazy breathing though and am going to try and maybe leave it off more. This all came up after an accident last summer so 24/7 is new to me yet. AS for the whooping cough. I had it at 18 months and very severe according to my parents they didn't think I would live. I am sure it affected my lungs but then I should have smoked for all those years so I can't blame it on the whooping cough.
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PennyPA
Contributing Member

USA
4731 Posts

Posted - Dec 01 2013 :  1:36:55 PM  Show Profile  Reply with Quote
It'd be nice to see the TLC number, too.

****************************************************************

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




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greyfox612
Member

USA
35 Posts

Posted - Dec 01 2013 :  4:30:17 PM  Show Profile  Reply with Quote
Carol, I'll have to study that link a few times till I understand it better. Thanks for the info.

Penny, I read some about your lung reduction surgery. How does that help you to breath better? I'm from PA btw. Near DuBois.
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CarolCA
Contributing Member

USA
3211 Posts

Posted - Dec 01 2013 :  6:01:38 PM  Show Profile  Reply with Quote
Don't try and understand it all at once. Just concentrate on the things we asked for and get an overall picture. Most of us have been on here for years so it takes awhile and I still have to look up things frequently to make sure I am getting it right and then even then I don't.
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PennyPA
Contributing Member

USA
4731 Posts

Posted - Dec 01 2013 :  7:59:47 PM  Show Profile  Reply with Quote
greyfox, in those of us with emphysema, our lungs tend to get longer and longer over the years and then press down on the diaphragm, the muscle that controls our breathing so then it can't do it's job very well and we get sob rather easily. LVRS removes the top sections of our lungs so the remainder can move up into their place and get the heck off the diaphragm. After the diaphragm gives a sigh of relief, it goes about doing it's job again and we don't get sob as easily. It's for those of us too chicken to get a transplant (ME!!!)

Finish off the LVRS story then join us on our travels around the country. Since we left the Poconos, we've seen some beautiful sights and met some fantastic people. This is one wonderful country.


****************************************************************

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




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CarolCA
Contributing Member

USA
3211 Posts

Posted - Dec 01 2013 :  10:36:35 PM  Show Profile  Reply with Quote
Penny, I never heard LVRS explained like that. I thought it was cutting out the bad so the good could just function more efficiently. I never thought about the lungs moving up, just thought that what was left was the good stuff. I guess it is all one and the same as long as it works and it sure did for you.
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PennyPA
Contributing Member

USA
4731 Posts

Posted - Dec 02 2013 :  12:36:40 AM  Show Profile  Reply with Quote
The good can function more efficiently because there's more room in there for it to function properly. That's how we get rid of the awful sob. And that's why the criteria for LVRS contains the statement that most (not all but MOST) of the damage must be in the upper lungs...because that's what they cut out.

****************************************************************

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




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greyfox612
Member

USA
35 Posts

Posted - Dec 04 2013 :  09:15:08 AM  Show Profile  Reply with Quote
I have a regular appt. with my pcp on Dec. 11. I called my pulmo. Can hardly get through to her with the new system they have now. Anyways she's going to send my PFT results to my pcp, so hopefully he'll be able to explain some of the things on there w/o waiting till I see her in Feb. I will let you know what I learn. Thanks again.

Jerry
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PennyPA
Contributing Member

USA
4731 Posts

Posted - Dec 04 2013 :  11:26:50 AM  Show Profile  Reply with Quote
Did you get a copy of the PFT results? Whenever you have ANY tests done, you should get a printed copy of the test results along with the interpretation, if there is one. Did you find out what your FEV1, TLC, RV and DLCO numbers were...in percentages? Many PCPs aren't all that familiar with PFT numbers.

****************************************************************

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS





Edited by - PennyPA on Dec 04 2013 11:27:31 AM
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greyfox612
Member

USA
35 Posts

Posted - Dec 04 2013 :  5:24:00 PM  Show Profile  Reply with Quote
No I haven't found out any numbers yet. They've made it a real pain to get to talk to the pulmo. Whole new answering system. They are supposed to send the report to my pcp. I'm gonna ask him for a copy of it.
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greyfox612
Member

USA
35 Posts

Posted - Feb 21 2014 :  06:55:29 AM  Show Profile  Reply with Quote
Well I finally got back to see my pulmo. yesterday. She was at one of her new satellite offices and didn't have access to a lot in my info for some reason. She did tell me my FEV1 was 26% and my FVC is 32%. I couldn't remember the other ones you guys asked me about. I should have got on here and written them down before I went but I didn't think of that till it was too late. Where she was she had no way to print out the report. It was in an office in a new hospital they purchased and obviously aren't set up very well there yet.

She said I have stage 4 COPD and I have obstruction and restriction. She said the obstruction is from the narrowing of my bronchial tubes and the restriction she thinks is mostly from my paralyzed diaphragm. Now I might have those 2 backwards. Anyways, thanks in advance for any suggestions.

Jerry
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greyfox612
Member

USA
35 Posts

Posted - Feb 21 2014 :  06:58:45 AM  Show Profile  Reply with Quote
PS: She also gave me an RX for Spiriva to add to my Qvar.
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rosytomato
Contributing Member

1107 Posts

Posted - Feb 21 2014 :  4:44:28 PM  Show Profile  Reply with Quote
You should ask the office to send you a copy of your test results, as Penny stated above. If there was a prior one, ask for a copy of that one also.
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PennyPA
Contributing Member

USA
4731 Posts

Posted - Feb 22 2014 :  12:43:53 AM  Show Profile  Reply with Quote
The asthma is most often referred to as a restrictive disease while the chronic bronchitis/emphysema is considered obstructive.

Is Qvar another med like Advair/Symbicort and used instead of those?

****************************************************************

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




Go to Top of Page

greyfox612
Member

USA
35 Posts

Posted - Feb 22 2014 :  08:02:24 AM  Show Profile  Reply with Quote
Qvar is a cortocosteroid for inflammation.
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CarolCA
Contributing Member

USA
3211 Posts

Posted - Feb 22 2014 :  3:33:16 PM  Show Profile  Reply with Quote
Are you on O2? Were you given a walk test to see if you needed it? Have you had an overnight oximeter test? If you answered all this somewhere, forgive me cause I can't find it. Frankly, I would be very concerned about your FVC because restrictive diseases can progress faster than COPD. You have a different set of problems with the paralyzed diaphragm. I would think that would affect both restrictive and obstructive. Inhalers don't help much with restrictive diseases so O2 is usually the best medicine.

Penny, there seems to be a lot of confusion on Asthma lately as to where it belongs. I always felt it was restrictive but lately have been told it is often obstructive so not sure where it belongs. Since inhalers are used most often as treatment for Asthma it must fall somewhere in between the two.
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PennyPA
Contributing Member

USA
4731 Posts

Posted - Feb 22 2014 :  4:34:32 PM  Show Profile  Reply with Quote
Well, with asthma, you can't get the air in so one would think it's obstructive and with emphysema, you can't get the air out so one would also think it's obstructive. Dave said some time ago that asthma is obstructive but I've also read that it's restrictive because the airways close up (sort of) and "restrict" the inhalation of O2.

I would think the paralyzed diaphragm would cause the most trouble since it's just not working and since that's the primary breathing muscle, one would think it'd be very difficult to get air in whether obstructive OR restrictive.

****************************************************************

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




Go to Top of Page

greyfox612
Member

USA
35 Posts

Posted - Feb 22 2014 :  6:50:14 PM  Show Profile  Reply with Quote
Yes I'm on O2. 2L tinkering around the house and 3L with my cpap at night. I did do the 6 min. walk test. And yes I had the overnight oximeter test. That's how they determined the 3L at night. In fact I did it twice. The first time on 2L and it was still a bit low, so then on 3L which worked out.

My pulmo. thinks too, my tests were so bad because of the paralyzed diaphragm. She didn't seem to be too much of a proponent of the diaphragm plication surgery. I've had allergies and asthma since I was a kid. She seems to think the years of inflammation have made my bronchial tubes smaller. According to her the Spiriva may help, and it may not. But it's worth a try.

Now Carol, you've got me worried about the FVC. Can you elaborate? Thanks you guys for the answers.
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greyfox612
Member

USA
35 Posts

Posted - Feb 22 2014 :  6:52:35 PM  Show Profile  Reply with Quote
I meant to add that just sitting reading or watching tv w/o O2 I run around 92% give or take. With the O2 on about 98%. But it doesn't take much exertion to make me SOB if I don't use my O2.
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