non smoking COPD

[hlsf]

I am a non smoker, 50yo and just got diagnosed (2010) with a copd at the mild stage that I believe I got from our home central air conditioner/furnance through filters that were not changed for 2 1/2 years( from 2004-2006).  First started having symptoms of my COPD about 2 years after the exposure (2008).  though I tested normal on my spirometer, i was found to have lung volumes showing air trapping and a mildly reduced diffusion capacity.  On the CT scan they found extensive bullous changes (cysts with air) in both lungs but so small they would not have been picked up on x-ray.  i recently did an overnight pulse oximetry and my blood oxygen ranges were between 93-97 because for years I have felt like I was sufficating when I would lie down to go to sleep.  My doctor says I shouldn't really be having symptoms with my mild ratings, but i really am, and have known for years something was wrong and have even stopped teaching tennis and have just been pacing myself to do things.  Anyone out there with anything similar?  worried about my prognosis and how long I will last.  bronchiodilators did not do anything for me when they tested me for the spirometer but they still put me on spiriva.  it seems to me they are drawing straws to try and figure out what to do.  Any suggestions on things to give me longevity would be welcomed.  I still can walk for an hour, but later that evening, when I try to sleep, I fel I am suffocating.

[sstitanic2]

Hi. I am so sorry it took so long for me to get back to you. I hope this finds you well.
I know how hard it is to adjust mentally. It took the wind out of me too. I started rehab and I go twice a week. You might ask your doctor if he could get you in to one. They have us do a lot of exercises such as the tread mill and ski machine. We lift weights.  We walk around a track and do leg exercises.I found out that exercise is the key. It makes you feel better physically and mentally. I hear from other patients and most are worse than me. I feel more at peace with it but I still plan on going out kicking and screaming and clutching every door way as I go. I think a good frame of mind is essential and I think you have that. You sound a lot like me. I take my meds and keep tabs on my oxy levels but otherwise I plug along like normal. I am slower and have to rest more, but it all gets done. Considering I almost went out in Sept. I feel great. I think having a place like rehab really helps. Let me know what u think. Sally

[hlsf]

I would love to know about your re-hab.  thank you thank you thank you.  saw your profile.  I see you are an animal lover like I am.  We have 3 horses, 4 jack russells, a cat and 3 birds and live out in the country in Northern, VA.  My animals are like my children.  I have a wonderful husband who I have only had 7 years of marriage with but who I really believe is my soul mate.  We each have a daughter from separate marriages.  His daughter is 19, and my daughter will be 21 this June. I also love to garden and am a master gardener.  I started having obvious problems with health a few years ago, but they couldn't figure out what was going on until they scanned the bottom half of my lungs on a CT scan while looking for something else this January 2010 and saw cystic masses all around the bottom of both lungs.  So we have been diagnosed about the same time it looks like.  They are still trying to figure out what exactly to label my lung disease.  It seems it is very rare.  I do believe it is from bad indoor air quality which probably is very rare now a days, thus the reason for my condition to be so rare.  Anyhow, we shall see what they come up with.  Anyhow, thanks for sharing and let me know if any of the things you are doing seem to make a difference.  Let me know if you have any advice on how to adjust to this mentally.  Having a difficult time coping with this all.  I am looking into going to some support groups, and maybe talking to someone.  I feel afraid to do things I used to in fear I am going to make things worse.  I think this is something I have to get over but it is difficult not to think this way.

[sstitanic2]

I am going to be going to rehab. I will learn a ton of things to manage my copd. If you would like I can pass along what I learn. Let me know. God Bless

[sstitanic2]

You are most welcome. Yes I am married. Your partner will adjust to the use of the cpap. It is quiet and it does keep you from snoring. No worries. Good luck and God Bless.

[hlsf]

thank you so much for your comment.  I am scheduled for a sleep study this Wednesday for sleep apnea.  I do not catch myself snoring so I did not think it would be this, but i would be thankful if it is, if there is anything they can do about it to make sleeping at night easier.  My doctor did say if the test does come out that I have sleep apnea that they will then do another test to see how I respond to a cpap.  I do not know if you are married, but I have never been hooked up to something at night and it sounds like it is a big adjustment for any relationship.  thanks so much for sharing.

[sstitanic2]

Hi
It sounds to me like you could have sleep apnea. I have copd and suffer from sleep apnea. They usually go hand in hand. I have a cpap that helps a lot and I can breathe at night. My lung doctor did my testing through a sleep clinic. It has been most helpful.
Good luck and God Bless