COPD, Emphysema and such with Apnea.

[retired_guy]

I'm starting this dialog to discuss the (maybe) unique problems those of us that have COPD issues might experience.

In my case they keep telling me I have "Severe Emphysema." I test at 23% normal FEV, so that doesn't sound all that positive.

But I absolutely refuse to let it get in my way all that much. O2 for instance is not allowed in my house. When not eaten by the puppy, I had a nice "fitbit" thing that kept track of my steps taken and miles walked during the day. I use(d) it to encourage me to keep active and do more.

But the biggest single thing that has helped me the most is the Cpap therapy. The mask keeps my O2 level perking right along all night at 93%. That's pretty darn good for an old guy.

Robysue mentioned something once about how EPR could make live easier for COPD folks, so I tried it for the first time. Darned if she wasn't right again!

Anyhow, we can have some discussion on how all of these things are working in your life if you are one of us that have a tiny bit of breathing challenges.

Your turn, Surfer...

[retired_guy]

p.s..... chasing the puppy who just ran outside after stealing a pair of my undershorts from the laundry basket has provided me with much more exercise than I really wanted......................

[surferdude2]

Briefly (if possible), My lung capacity has not been great for past 15 years or so. That never caused any real problems until last December when I awakened at 4 am in extreme distress as if suffocating. I had to sit up to catch my breath. Then I couldn't lay down without getting the suffocation feeling and it persisted for several days. After toughing it out for ever a month, I decided to go see a doctor about it. Having not been to one lately I found that my trusty primary care giver had departed the area. Sooo..I put in a request at our new hospital, who now has corralled all the local doctors into a new medical building attached to the hospital, to become a new patient of any available doctor who would accept me. The person taking my application said they would be in touch.

Sooo..I waited another month but nobody called and I was getting desperate for sleep. I think lack of sleep was affecting my judgement and I was losing track of time and giving too much credit to the promise of "they would be in touch" so I decided to go to a new facility that had just opened locally called "Express Care". That turned out to be a good decision since I was able to get in immediately. That's better than the hospital ER service since it's usually crowded with folks in even worse shape than I.

Long story longer, the nurse practitioner at Express Care gave me a spirometer test and quickly concluded that I had COPD and probably emphysema. She gave me a prescription for an albuterol aerosol huffer and referred me to a pulmonologist. The albuterol didn't seem to do anything at all for me and I still have several puffs left that will likely never be used. Oh, I nearly forgot...she also prescribed Flovent, which is another aerosol, and it didn't do anything except cost me $200 since my insurance formulary didn't choose to include it.

Moving along...and skipping in order to finish before supper...The pulmomologist agreed with the NP and decided to run some test in order to quantify my state of being and possibly to secure the funds for his upcoming Mercedes payment. Several appointments and two months later he determined that my lung capacity is 66% of what is expected for old farts like me and that it shouldn't be bothering me all that much. I told him, as I had on all the other appointments, that I was having a problem getting enough sleep. Finally he decided to order a sleep lab study which I attended. I probably slept 15 minutes during the night of that study and the person administering the test remarked that she didn't know if they could get enough info from that to make any decisions.

Little did she know...at the followup appointment with my Pulman, who is certified in sleep study interpretation, he stated that I slept 4 hours and it showed that I didn't have enough sleep apnea to qualify for a CPAP machine under the Medicare. They require an AHI count of 5 and he said I only had a 1.9 count. This was at the last meeting with him and at that time I told "Medicare be damned" I want a CPAP machine and I'll pay for it out of pocket. He was then willing to give me the necessary prescription and referred me to a local dealer who had used CPAPs and also said I could run a wanted ad in the local paper and perhaps get one that way.

I got a ResMed S9 Elite with humidifier with only 600 hours on it for $500. That was 7 days ago and I'm in the self titration process to get this torture device tuned in to a tolerable level where it can help me as opposed to making things worse (did I mention my nose is raw meat). I learning a lot, especially how to adjust the mask properly but so far I haven't established much of a trend with the pressure setting. It'll take lots more time.

Now retired_guy, aren't you sorry you asked? I forgot what the question was but I'll try harder if you'll ask again since I had to first unload this saga onto someone and you were right there.

Oh, now I remember, you wanted to know how folks with COPD such as emphysema and asthma who also had sleep apnea were coping with it. Well, sorry to say, I'm not coping with it very well and can't offer much useful data to you. At this point I haven't proven the doctor incorrect and can't be sure that I even have sleep apnea. Since I don't sleep well in a sleep lab test and the Pulman said he wasn't aware of any home sleep tests that would be accepted by Medicare, I'll have to go this alone and hope I can hit on the answer before I run out of money or die, whichever comes first.

I'll be happy to keep you informed of my progress (or lack thereof) and answer any questions you ask. Feel free to make any comments that come to mind and rest assured that I can handle any foolish suggestions or criticisms you come up with. I hope we can help each other this way and possibly help others with these same issues. Mostly I just hope I can sleep more than 4 hours a night. My emphysema only affects me when I exert myself too much so it's not a big deal to control that. I do my treadmill @ 3 mph for 2 miles 3 times per week and have no breathing problems at all. However, twice up and down the basement stairs gets me puffing and distressed for a while.

End of saga. Thanks for reading. If you made it this far you're tough.

ps. I saved a whole bunch for later so be careful what you ask for.

[retired_guy]

........until last December when I awakened at 4 am in extreme distress as if suffocating.


.......spirometer test and quickly concluded that I had COPD and probably emphysema. She gave me a prescription for an albuterol aerosol huffer and referred me to a pulmonologist. The albuterol didn't seem to do anything at all for me ...........

........Flovent, which is another aerosol, and it didn't do anything except cost me $200 since my insurance formulary didn't choose to include it.

....... At this point I haven't proven the doctor incorrect and can't be sure that I even have sleep apnea. Since I don't sleep well in a sleep lab test and the Pulman said he wasn't aware of any home sleep tests that would be accepted by Medicare, I'll have to go this alone and hope I can hit on the answer before I run out of money or die, whichever comes first.

However, twice up and down the basement stairs gets me puffing and distressed for a while.

There are a couple of things that caught my eye.

.. Albuterol is a "rescue" med. They used to put people on it 24/7 but what I found that they won't admit to is if you use it on a regular/long term basis it will not only stop helping, but actually make things worse. So as a "rescue" to keep you out of the emergency room, it's a good drug. It's also pretty cheap, so keep it on hand.

... Flovent is an inhaled steroid. There are better products out there such as Advair and a few others. If you truly do have emphysema you should stay on an inhaled steroid. No, it won't stop an exacerbation in it's tracks, but it's not supposed to. That's what Albuterol is supposed to do.

As far as waking up not breathing? That could be heart issues too. I think you've probably studied up on that a bit.

....stairs can be a problem. Yesterday I carried a computer up a long flight of stairs for a customer of mine that is actually more goofed up than I am. I did it fine by taking one step at a time. Left foot up, then the right foot to only one step. If I actually tried to walk up them like normal folk, I would be in sorry shape if/when I made it to the top. So yeah, stairs can be a problem.... Practice "slowwwwww..........."

I don't know if you have apnea or not. It doesn't sound like you have major issues. The low ahi counts could be caused from your COPD. There is a lot of research now that has shown cpap therapy is very useful for COPD folks. Something like a 75% better survival rate? That's a good thing actually. I know in my case my O2 perks along at a cool 93% all night long now that I'm on therapy.

So far as the rest of it is concerned, such as "get this torture device tuned in to a tolerable level where it can help me as opposed to making things worse.........." Yeah, you kind of need to get past that idea. The therapy will only work when and if we make up our minds to use it. It doesn't adapt to us, we adapt to it.

[surferdude2]

As far as waking up not breathing? That could be heart issues too. I think you've probably studied up on that a bit.

Yep, I even had a echocardiogram with Doppler and my Pulman said it looked OK. Funny thing though, and I'll be taking this up with him, there was a line in the report that stated "abnormal LV relaxation pattern by Doppler consistent with diastolic dysfunction".

That doesn't sound like OK to me. It sounds more like "if you lie down, you may have trouble breathing".

[annbower1125]

I actually have COPD, Asthma and Sleep apnea. I have to have a breathing test tomorrow to see what is going on. During the day I feel deprived of oxygen even though the oxi meter shows 97 to 98 but it doesn't feel that way in my head. I am on Symbicort, Combivent and brovana which is a nebulizer medicine. Hopefully I can offer more advice in a few days after the results come in.

[surferdude2]

annbower1125, I have a full breathing test report and since I have similar symptoms to yours, I'll be interest in how we compare. i'll digitize mine and have it ready to post if need be. Like you, I have some days that I feel all out of breath but haven't done anything to cause it, physically that is. Maybe my brain is working so hard it's causing me to be breathless...nah, not likely.

[annbower1125]

glad I am not the only one surferdude, as soon as I get the results I will post them here

[surferdude2]

OK Ann, I'll look for your return post and wish you the best. I just scanned my Plethysmography (there's a word) report so here it is for your reference and comparison. Maybe we can both learn something about using CPAP with COPD.

[retired_guy]

I actually have COPD, Asthma and Sleep apnea. I have to have a breathing test tomorrow to see what is going on. During the day I feel deprived of oxygen even though the oxi meter shows 97 to 98 but it doesn't feel that way in my head. I am on Symbicort, Combivent and brovana which is a nebulizer medicine. Hopefully I can offer more advice in a few days after the results come in.

What I think will be of interest here Ann is how your Asthma has done since you began cpap therapy. Do you feel it has helped? What areas of using the mask/pressure have given you more difficulty, if any.