COPD new to CPAP

Hi all.
Im Ida, 44 years old, female, high school teacher.
Never been a smoker in my life, but I have COPD. I believe its from living in cities where the air pollution was horrid, and there were no emission controls etc on the vehicles.

Anyway, I've been reading here for a while, and actually this site helped me know what apap machine and mask to buy. Unlike most people I've read about, I loved the machine from the first few minutes.

I could BREATHE!! It saddens me to realize that dry mouth and throat (I have a mouth mask), drool, being hooked up to a 6 foot hose....none of those bother me much because for the first time in years I
...can catch my breath
...have some energy. Not a lot, but I can do things like dry off after a bath without getting out of breath.

Anyway, I read something from someone in here...a complaint that since they started using their machine they have to go pee various times thru the night.

A reader answered that this is a good thing because it means the machine is working.

Well, same with me. Before the machine I used to be all swollen on the weekends after a hard week at work. Id literally crash...sleep all weekend, and pee like crazy, lose the excess fluid and start over.

Never could find out why.

Now it seems there's some relationship between oxygen/hypoxia and fluid retention? My question is

WHAT is the relationship between digestive system and oxygen levels? Before the apap machine my oxygen saturation levels dropped into the 70s every night. Not exaggerating or joking.

I have a pulse oximeter and used it various nights over diferrent time frames throughout the year and sat levels always dropped into 80s, low 80s and many times 70s. During the day when I was awake it was always in the 90s.

Never had the money for sleep study or cpap until I finally got on the FLEX insurance account and my doctor friend rxed the cpap. Its changed my life.

Sorry this is so long.

THANK Y'ALL for having this forum.

If anyone knows why too little oxygen causes water retention and enough oxygen makes the body release fluid id really appreciate being enlightened.

Ida
--COPD, chronic bronchitis type, and chronic asthma, and high blood pressure, and low throid. And working 50+ hours a week. Miraculously

Hi Ida,
Welcome to the forum and to cpap. I'm somewhat new here myself.

On the question about bathroom trips...you have it backwards. Frequent trips to the head are common with sleep apnea and once you get good treatment, that should ease off.

And this second comment is very serious and I hope you act on it. I believe you should be tested for alpha 1 anti-tripson deficiency. It's a genetic condition that causes premature emphysema. Best part is it is treatable with "replacement" therapy. Non-smokers don't generally get copd even in an urban setting.

You sound like a committed person. Teaching isn't easy. I hope treatment for osa gives you a boost. Lots of good people here to offer help so just shout out.
Jamis

Thanks for answering!
You've given me a lot to think about.

Right now I can't afford testing. I can barely afford to make it month to month.

About the urban setting: it was in a developing country. The city I lived in was in a small area as far as land mass is concerned, but had about 1 million people. It is surrounded by mountains, so all the pollution got trapped inside. I started getting serious asthma there.

And then I lived in similarly polluted areas. When not with pollution, it was mold. Everywhere. Growing on the walls, in the cracks. I lived in tropical areas, and it's virtually impossible to get rid of the mold.

That said, as far as I know, I'm the only missionary who ended up with COPD, so even under those conditions it's not normal.

Plus, my grandfather, who wasn't a smoker either, ended up with ideopathic pulmonary fibrosis. I watched him get more and more debilitated as his O2 levels got less and less.

It was terrifying.

So maybe ....I dunno, that was so many years ago, I wonder if maybe he had that alpha1 thing and they didn't diagnose it, and it's hereditary and I have it too?

What is "replacement therapy"?

Another question....I just looked at the last month's results from the apap software, and my average hypopnea is .77 an hour. I dunno if that's good or bad. I know it used to be almost all the time.

In the entire month I only had ONE apnea. So the problem does seem to be that the air isn't getting through enough. It's getting through, just struggling to get through the blockage.

The incidents of bronchitis were pretty clearly defined. Living with the mold, pollution, etc., I'd get various bouts, and finally a nurse told me that I had chronic bronchitis and needed to treat it aggressively every time I ended up with a cold. That was back in 1996!

Thanks again for your info.

I'll look forward to being a part of the forum.

Ida

Check with the Lung Association. They might be able to guide you to resources for help/care.

IDA1 wrote: So maybe ....I dunno, that was so many years ago, I wonder if maybe he had that alpha1 thing and they didn't diagnose it, and it's hereditary and I have it too?
What is "replacement therapy"?

Hi Ida,
A family history of chronic lung condition is certainly significant. I had a friend with the disease I'm referring to. In normal folk, the lung tissue secretes enzymes that help protect the tissue from pollutants. The main enzyme is the alpha 1 qantitrypsin. If it's missing because of genetic defect...then early onset lung disease can occur.

http://en.wikipedia.org/wiki/Alpha_1-an ... deficiency

If you are a retired Missionary, see if the church can help you to get tested, And replacement therapy is via intravenous replacement of the missing enzyme. Usually done in the home by visiting nurse.

Feel free to PM me if you want to discuss this more.
Jamis

Welcome Ida..... Please take a minute to go up to the User Control Panel (under search, top left) and then to your Profile and then Edit Equipment. Choose your gear from the pull down menus and the choose to show those in TEXT, not pictures. This will put your equipment at the bottom of every post your write automatically, like mine below. Those with the same equipment can help you better than having to constantly ask you what you use!

I am a retired teacher so I feel your stress.... and your experiences in developing countries is admirable although your health has suffered as a result. My mom died from COPD so I know it is a terrible thing to deal with. She, however, smoked for 40 yrs. Your exposure to so many molds and pollutants is probably the culprit..... I am so sorry you are going through this.

I would have to do some research on the O2/digestive/edema relationships, but O2 is needed for every cell in the body to work well. With low O2 one can conclude that many organs or systems are becoming compromised to some degree. We have plenty of folks on the forum with medical knowledge who can answer your questions better....I am sure they will be along soon enough.

I hope you are taking meds for the BP and thyroid to keep those in check.

Once we know your machine/mask, we can figure out how to help you optimize things, if needed. If you are getting good therapy, your O2 should stablize during the night. If not, you may need to add some O2 supplemental to your intake. A few folks on the forum do this for one medical reason or another.

Take care...... I hope you will rest and relax over your Thanksgiving break. Enjoy your holiday!