COPD Webinar with Dr. Noah Greenspan

[sandy07]

David....my lungs feel the same way. When I get on the tread mill, even if only for 2 minutes, I feel better. Not for long tho. If I could stay on the treadmill longer each time I would feel better longer each time....I hope. If you don't have a treadmill then just walk up and down the hall or better yet, if you are in an apartment block with stairs you could go up and down a few of those each day. I don't have stairs so I use my little white plastic step stool. I'm up to 8 steps alternating legs. Not much but my legs feel stronger. We have to start somewhere. If there's plugins in your apartment block's hallway you could move your oxygen out there and walk up and down the halls.

You MUST do it every day tho. I heard that after doing something 8 times it becomes a habit. So MAKE SURE to do it 8 times. The less we do the less we CAN do. Maybe we should set an alarm to go off at exercise time every day. YES. I think I'm going to try that . GOOD IDEA SANDY.

[David]

I am on oxygen at night and not during the day. I have been active up to about a year ago. I use to do stairs and park a good distance from the store so I would walk. I use to go up to the beach and walk the board walk. Each is getting harder to do and I have to park closer to the store now. I use to could hide it but now people are asking "Are you alright?" I barely can answer, Yes. Sometimes I feel like the only person like this. I look around and I don't see anyone else struggling like me.

It seems like the disease slows me down as years go by. Now I stop when I am so short of breath that I panic. For about a minute I feel like I am out in space where there is no oxygen. I have to lean on something till I get my breath back. Sometimes I get caught standing in the rain. Sometimes it just comes out of the blue. If I go over 4 hours without the Nebulizer I have to use the rescue inhaler to get to the Nebulizer.

I was wondering if something else is wrong besides the Emphysema. I made the Doctor order an x-ray on my last visit and I have not heard from him so I guess all is the same. Thought I might have lung cancer are something.

So I reckon I will keep on an exercise program and do what I can do.

I still go to the store everyday and walk up the street everyday. I just wish I could go more than 50 yards at a time. Carrying a gallon of milk or taking the trash out is a real chore. I call that strenuous exercise

[AudreyNY]

Sounds like you might need oxygen during the day now for activity Dave. Have your doctor check your oxygen level after walking for a few minutes in his office. You should check your oxygen levels when exercising too. Do you have a oximeter? They are not expensive and it will tell you if you are dropping into dangerous oxygen levels.

[sandy07]

David...maybe you need more/different inhalers. Perhaps your doctor could give you some samples. OH...did you say you got some Tudorza? Well...maybe he's got something else you could try that doesn't cost so much.

yes, sounds like you need daytime oxygen now. I thought you were using it during the day? we were talking about lines on the face. Is that why you don't want to wear it?

[David]

I did a walk test last month in the Doctor's office. Oxygen didn't fall below 90. Doctor says I lost the ability to exercise and I need a lung transplant. I take it he means I lost most of the elasticity in my lungs. That is what it feels like. Like you blow a balloon up and it stays full.
Have you seen the COPD commercial on TV where the elephant is sitting on the persons chest. Well, I feel like I need the elephant to sit on my chest to deflate the air. I don't have a problem taking air in.

I have an oximeter that I keep with me all the time. About the only time it drops below 90 is when I take a shower but returns back to normal rather quickly when I stop and rest. So I can do a walk test myself.

I have tried every inhaler that I know of in my area. Keep in mind I have had Emphysema for over 30 years now. Maybe my lungs are just tired.

I am on oxygen at night. The lines on the face don't bother me any more I do wake up after 4 to 6 hours of sleep and have to hit my rescue inhaler because my lungs feel full. I have to use a Nebulizer with Albuterol every 4 or 5 hours.

I have used the oxygen during the day to see if it would help my problem. It's a little scary because it doesn't stop my shortness of breath. That's not a good sign.

Next week I am ordering a Pulse O2 from Withings.com
During the day it captures steps, distance walked, elevation climbed and calories burned. At night,
it monitors your sleeping cycles. And when asked, it measures your heart rate and blood oxygen level.


I appreciate all the help and advice. You guys and gals are the best.

[skate4life]

David - when was the last time you had an echo to see if you have pulmonary hypertension and/or heart valve regurgitation? Not much to do about it except crank up the oxygen, but it might explain the changes you are feeling. Everyone is different, as you know, so 90 is not always a magic number. I become SOB with 93 and then the work of breathing (muscles, ribs, diaphragm)just make me feel even worse.

I've been using Brovana, a LABA via my nebulizer (and covered under Medicare part B) that helps a lot with the static hyperinflation and then the PLB helps with the dynamic hyperinflation. I do have to use my albuterol during the night too and in the afternoon. I've had a big change in the last year even tho my FEV1 has stayed at 26. The Brovana takes longer to bronchodilate and doesn't last as long. I found I was using the oxygen during day for more hours until now am 24/7.

You should consider calling about the result of the chest x-ray. Don't wait for them to call you!
I'm sorry you are feeling so lousy.

[Bo H]

David, I can't believe a Dr. said you have lost the ability to exercise. He is dead wrong. I was diagnosed as severe in 1985 with a fev1 of 30%. My fev1 is 17% now and my lungs have lost their elasticity. I use Morphine to fool my lungs into thinking I'm getting enough 02 so it doesn't send out the short of breath signals as much as normal. I do pursed lip breathing every breath I take in and let out to help remove the stale air and C02 from my lungs. I walk a mile nonstop on the treadmill every day plus use weights and rubber bands. I know people worse than me who exercise every day. That is the reason we are still alive and kicking. Using supplemental oxygen has never helped my sob but I have been using it 24/7 for the last 8 years to keep from killing my heart and other vital organs. I can guarantee that you will feel better and be able to do much more if you start a good exercise program.

[David]

Skate and Bo I do appreciate the information. From what I understand from your post is I definitely have a problem somewhere.
I insisted on the x-ray and Lung Function Test from my Pulmonary doctor. He did one the year before and said it wasn't necessary but I told him I wanted it done.

I will get an appointment with my General Practice Dr and let him see the test. I really hate to change my Pulmonary Dr. They say he is good but a man of few words and he doesn't give hugs I am not sure what he means by "lost the ability to exercise". I know he did not mean I can't exercise because he is big on exercising. He would like me to exercise from sun up to sun down. He always changes the subject to "you need a lung Transplant". Since I turn it down he seems to not have anything else to say to me. I think more along the lines of Stem Cell research and he doesn't.

I will get more of my information from the test soon and report it back here. I think the fev1 was 42% so I don't think I should be having this much of a problem. My Medicare will not pay anything on 24/7 oxygen until the O2 falls to 88% or less.

I will ask the Doctor to check my pulmonary hypertension and/or heart valve regurgitation. It's been a while. The last time my heart was checked the Cardiology Dr said everything was good and I did not have any heart problems. I do know I have normal blood pressure and am not on any blood pressure medicine.

I do stay active during the day and exercise by walking. I go down to the beach. It's not like I am doing nothing. I just have to stop when I start panting and breathing hard. I breath hard most of the day so I figure my lungs are getting a work out
I have learned to live with it. It's just uncomfortable. Especially when I feel like someone cut my oxygen off.

[sandy07]

Being short of breath is not a sign that your oxygen is low. They are 2 separate things. Being short of breath will not hurt you.

Sounds like a different inhaler or drug will help. I learn something different from every doctor I see. In my ER you take what you get and I've had some good and some bad doctors there. The last one said I could use my Symbicort as many times as I wanted....not just twice. I'm using it 3 times and it has helped a lot.

I think it's time I had my heart checked out too. I hope you can find something to help.

[David]

I remember having my heart checked back in 2006. They injected me with something and I couldn't breath so they had to give me the antidote shot to stop the first shot. Then put me under a machine. That test was not 100% accurate since they had to give the the antidote shot but they claimed it was good enough.

They also did an ultrasonic test and it showed every thing as Good!

I will make an appointment with my primary Dr soon and will go from there.

[barb7330]

Very interesting.

[skate4life]

Exercise and SOB - As I continue to read various scenarios of people, I realize that it is not all cut and dry. There is much more to it than just oxygen, heart rate, and pulse oximeter readings, but it is how we actually breathe. PLB helps a lot but not in every situation. Certain medications will help bronchodilate as well as relieve some of the static hyperinflation. PLB helps relieve the dynamic hyperinflation which can be caused by the way we breath. If we take shallow breaths or not taking long enough with expiration then we are not getting as much air out as possible, that then limits the space available to draw air in. Oximeter can still show good readings in spite of struggling to breath. I wonder how many of us do PLB long enough when SOB. It can take a number of minutes to resolve. Other times, our sats will have dropped, like climbing stairs, and then it may take a few minutes to get it back up. At this point we might need to just work at slowing our rate and really focusing on expiration and/or increase our oxygen flow (if it is prescribed for us.)

If we take the time to look back on what activity we just did and got SOB, perhaps we were not pacing ourselves properly. It can catch you up real quick The same activity in late afternoon might cause more SOB than mid morning. I exercise mid morning when my meds are at their best.

As for 'SOB will not hurt us' - well, as long as our sats stay up with/without oxygen depending on your personal situation, it won't hurt our other organs (heart, muscles, etc,) but the WORK of breathing does hurt at times! Our ribs and muscles can get really sore!!

While I agree exercise is very valuable, not everyone can push themselves as hard as all the articles say, especially for those of us in the very severe category. .....Just some rambling thoughts.

[David]

I breath so hard sometimes my sides hurt. I was told by my Doctor that all oxygen does is keep my other organs from getting damaged. His words not mine.

I will be making a Doctor appointment this week with my Primary Dr, not the Pulmonary Dr. I have gone long enough. I need some answers. I have heard that shortness of breath can be caused by a heart problem too. Maybe I need to get checked to be on the safe side.

From what I have read in here from people who are worse than me, I should not be this short of breath at the stage I am at.
I can't even exercise anymore. Now that is bad! I look back the last year and have pushed myself and it steady got worse. I tried to tell my Pulmonary Dr last October and again this past April and it falls on deaf ears. He keeps wanting me to get on the lung transplant list. So I will take another path.

I have learned a lot for the people in this forum so I do want to say thanks. I will see about getting some test run so maybe I can eliminate some of my 'what if's'.

[Blossom/Jackie W.]

Never connected to the Webinar Light but glad to hear that you did!

There's a tremendous amount of subject matter being touched on in this thread; makes me a bit nervous to the point that I want to be careful what I say/add.... So; though certainly not all inclusive and in random order I'll only go with a few "obvious"

It's true COPD is not a one size fits all disease. Many symptoms and trajectories can follow traditional patters but just as often; if not more, it can sway from.....

Let's start with you David.... the thing about COPD/Emphysema is exactly that. Getting the bad air out. Getting it in isn't the problem. If you think of a blacksmith's bellows or an accordion, the air has to be forced out just as much as in.... It's a 2 way street.

With an FEV 1 of 42% (though I've no idea what your DLCO is etc) and assuming you're not terribly overweight, and assuming you push yourself a bit when you exercise (not just "meander or stroll", I would suggest you have some other issues going on that requires further eploration..... (and yes heart issues can certainly enter in as well) However; folks should also keep in mind that there's also in excess of 100 Interstitial lung diseases. Not saying that you have even ANY of these BUT sometimes it's not all cut and dry.... Hee's a link on some of it if anyone's interested
www.mayoclinic.org/diseases-conditions/interstitial-lung-disease/basics/symptoms/con-20024481

It's also very possible dear that you have an on-going infection. Heck; I'm a good example of that with the pseudnomas (even Sue had it)and no one knew it. I can even trace it back at least 2 years.... How much ultimate ground I've lost because of it remains to be seen but..... it's a definite loss this time.

Exercise IS needed and IS important; no doubt about it and I swear by it! The most successful COPDer's I know (with a lot lower FEV1's) remain active and can outdo many others with a lot more. However; to exercise strenuously when you're ill (or recoverng)is foolish. You run the risk of wearing out the same muscles you're trying to re-enforce and if that little diaphragm of yours gets overburdened, the bellows will have no choice but to work even less. They need rest too.

Another little tidbit worth sharing..... PLB (Pursed Lip Breathing) Some folks are great at it and...... it works! But; keep something in mind..... if you have sinus trouble or allergies and you're stopped out; your nose can't help a lot. The fact of the matter is you want the air in but you also want it out in a controlled fashion. (Pursing the lips; slowing things down) So; at the end of the day.... get the air in any way you can!...... and as long as you're controlling the outflow slow, steady, smooth like gently cooling soup.... try to go with the ratio of twice the "breathing out time" as the breathing in time.

One last little thing I want to add if I may..... when I shower (- which is currently a big challenge till I get more strength back)I "up the flow" for a 10 minutes or so to use as a booster. Same thing If I've been eating or doing something and I've taken a drop.... I'll up the flow for 10 minutes but make darn sure you take it no longer and turn the darn thing back down. It'll help tremendously. (Sort of what Skate's referring to)

She also touched on something else....... and we're ALL guilty of this. Healthy people get winded but don't panic and they work their way back to catching their breath. We as COPD patients think disease and being SOB and sometimes panic rather than, (like healthy people) work our way back.....

Get some things checked over please Dave and...... get yourself a finger pulse oximeter but learn how to use it properly and KNOW why /how/when it can't always be trusted!

Good Luck dear...

[skate4life]

Jackie - that was a great synopsis of this thread!! Thank you for taking the time to do this. And of course, wishing you continued improvement!

[David]

Thank you so much Jackie and everyone who contributed to this thread. I have learned that something is surely wrong.

Jackie, thanks for the link. How did they find the infection you had for so long? I remember back in 1983 when I had pneumonia from the crude oil, I didn't have a fever or feel bad. I continued to work till I got so short of breath I had to take action. It took many months for the infection to cover my lungs. The next 2 times I did not wait as long to see a Doctor. I knew what was happening after that first experience.

I do have an oximeter. For the past 5 years it generally stays around 93 to 95%.

I have a Doctor's appointment in the morning at 9:30 a.m. Maybe I can get the ball to rolling so I can find some answers.
I haven't seen this Doctor since 2011. He is General Practice but he will listen and try to help.

[Blossom/Jackie W.]

Thanks Skate.... I really had to concentrate I'll tell you to be able to write it at this time.

David; in a nutshell...... they ran out of options to test/treat me for I think. Even Infectious Diseases was slow to release their protocols as well. Dave (my Dave) kinda forced that one. (You've obviously been there in a fashion)
Anyway; perhaps I'll expand on it in a seperate thread when I get a few more things clarified and I'm hoping some things will show (or not) on my CT scan that I had on Friday...

Good Luck with your GP and remember, you only need the one person willing to help and to get the ball rolling!

[David]

Well my Doctor's office called and said they are closed today because of the bad weather. Next appointment is Friday.
We had buckets of rain overnight.
Lot's of lightning and thunder pretty much constantly.

[skate4life]

I believe you were informed the last time when you posted about your webinar. So I will repeat.

5. Advertising and or Promotional links of any kind along with Spamming, flaming, as such, WILL NOT be tolerated.

This is a peer-to-peer community exclusively.

[zellie]

Ultimate Pulmonary Wellness Lecture Series, “EXERCISE AND PULMONARY DISEASE: MAXIMIZE YOUR WORKOUTS NOW!” will take place on Tuesday, NOVEMBER 18th from 7:00-8:00 PM EASTERN STANDARD TIME, followed by a 30-minute question and answer period. During this presentation, Noah will be discussing the most critical aspects of making sure that you are getting the safest and most effective workout. This includes how to choose the right starting point, how to progress and how to modify your program based upon your own individual needs.

This presentation will be different that "Move It Move It" which was presented previously. This one will jump right into what you should be doing and how!

To register for this webinar, visit our website at www.PulmonaryWellness.com and click on the WEBINAR

This is a very informative series on COPD. I have attended most of them. He covers nutrition, exercise, inhalers, etc. Past webinar's are available to view also.

[David]

I watched the 'Move It Move It' on youtube and there was a lot of good information in that video.