Nocturnal Oximetry

The pulmonologist sent me home with a device to record oxygen levels overnight.  He said that if oxygen is needed at night, using oxygen will extend life.  OK.  I have done this twice before, and it’s been ok, but COPD is a progressive disease, so maybe it’s time. . . And as was pointed out in one of the forums I read, if I check during the night with my ordinary pulse oximeter, it is checking when I am awake, and maybe it was lower when I was asleep.  Here we go!

The device is the size of a paperback book, with a normal finger thing on a long cord attached to the device.  There is a “posey” velcro band to hold the cord.  Not sure why this seems important, but they said to use it, so I did.  That was the first mistake.  The “posey” had a powerful scent.  Perhaps it is the sanitizing solution they used or perhaps the previous user is heavily perfumed.  Maybe it wasn’t even sanitized.  Since I sleep on my side with my hand near my head it was overpowering.  I took it off and put it away, but it took a good half hour of snorting and coughing to get my system cleared.  

Second mistake - the device blinks with a yellow light.  So I got up and covered the light with a ribbon.  Some light came through.  So I put the device face down on an adjacent pillow.  If I checked the device during the night, sometimes I forgot to put it face down.  I had dreams of wandering through the forest chasing lightning bugs.

Third mistake - the finger holder has a red light.  I had other dreams of fire engines.

It was the worst night sleep I’ve had in years!

Good news is that from what I can see, the saturation was acceptable.  Whenever I looked during the night, it was above 93.  We’ll see what the data shows when I send the device back to be read.

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I see that they are developing a device to connect to the iphone.  It costs around $50, but the reviews are not good.  

Perhaps improvements are on the way???  If it works, it would be great and a vast improvement on the $790 I signed that I would pay if I lost or destroyed the borrowed device.  For that money I could buy the best iphone SE with the greatest memory, pay sales tax, buy the oximeter and still have money left over.

Rescue Inhaler

Rescue Inhalers

Now it’s time for a rant.  IT IS NOT A RESCUE INHALER

As soon as I was diagnosed, I was given a prescription for Pro-Air, “a rescue inhaler”.  I know what inhaler means - breathe in.  I know what rescue means - save from drowning or a burning building.  During 8 years, I maybe used two inhalers.  Not that I shouldn’t have been using them.  But I only needed “rescuing” a few times - like when I was gardening in the sun at a humid 90º and didn’t think I could make it back to the house.

Calling the albuterol a rescue med meant I was not using it.

Then I went to Pulmonary Rehab.  (More on that in another post.)

That’s when I learned I should have been using it much more often.

Like before exercise.  Really?  I haven’t even started huffing and puffing because I’ve not even started.  So I clearly don’t need rescuing!  Well, it turns out that the inhaler opens lung passages to be able to accommodate more air, and it may make it easier to exercise longer and harder.  

Now I use it before exercise.  Also in the car on the way to the mall or grocery store, so that I can enjoy the walking.   And for some reason, around 4PM I seem to need it for no reason at all.

I asked my doc how to know if I was using it too much (this was after a week of heat and humidity and high ozone levels).  His answer was that I would know if I couldn’t stand the rapid heartbeat and hyper feeling.

So now I use the inhaler if it will improve my life not save my life.

Who can afford this?  

This fall, instead of giving me a paper copy of a prescription for Ventolin, the primecare folk sent it directly to the pharmacy.  The pharmacy called to see if I really wanted it filled, since, with my medical plan, they would cost $45 each!!!!  One of the forums I read has several folk who order their meds from Canada or India.  I tried their suggestion, and I placed an order.  Sixteen - yes, that’s 16 - inhalers were $89, including shipping.  Is there something wrong with this picture?  

Are these pharmacies legit?  Or are they the ones who sell the little blue pills. . .?  I took the advice of the folk on the forums I read.  A website to check on Canadian prices is http://www.pharmacychecker.com/  I have used three different pharmacies.  There is also an Indian pharmacyt that some of the forums recommend. It's alldaychemist.com. Please send me a message if you would like more information. You can  email here.

Please remember, this is not advice from a medical professional. This is my opinion as a COPD sufferer.

Chicken Soup

Chicken soup meets so many needs.  It’s a comfort food.  It clears your head.  It may even lessen the effects of a cold.  

There are lots of pretty good soups available in the supermarket, but I think they all need doctoring.  They have more sodium than I need.  They may have less spice than I like.  So I start with a can of soup.  Drain the liquid into a pot and add three times the water.  Bring this to a boil and then add the good stuff.  I usually have all kinds of noodles, orzo (a rice shaped pasta), Israeli couscous (like ancine di pepe, but the size of large BBs).

I got mine at Trader Joe’s, but I see it is available on Amazon:

I may also use ancine di pepe (little balls of pasta), alphabets, tubetti (little tubes of pasta).  I use whatever appeals to me.  I usually add extra spices like pepper, parsley, basil or thyme, again whatever suits my fancy.  Boil these in the stock until the pasta is done, then add the rest of the soup can, bring to a boil and enjoy.  I like to top with grated cheese to add a bit more protein.  If I have chives or onion tops, I sprinkle those on, too.  Makes a hearty, satisfying meal.  And gives me three or four times the servings for not much money.

If you have some stock, you can buy dried or refrigerated tortellini to make a wonderful soup.

This is “Tortellini im Brodo”.  To a basic stock, I added carrots, celery tops, parsley, onion.  Then cooked the tortellini (I like Rana brand in the refrigerator case, but it’s expensive.)  It can be topped with parmesan cheese, but I think that overwhelms this soup.

This is homemade wonton soup.

It’s a bit more work.  I used store-bought wonton wrappers, and filled them with ground chicken seasoned with egg, crumbs, spices.  

I try to have chicken stock in hand at all times.  Then I can make many kinds of soups quickly.  Wonton wrappers can be sliced into noodles that cook in seconds.  And I just discovered a german “pancake soup” called “Flädlesuppe” (German Crepe Soup).  Make some crêpes.  Slice them into ribbons (the easiest way is to roll them like a cigar and slice rings).  Put them in the hot stock.  

As an emergency back up, I keep Minori soup base on hand.

Much better than bouillon.  Quick and easy.  

An idea I grabbed from America’s Test Kitchen is to add a bit of plain gelatin to give the mouth-feel of a good broth.  It works!

Jazz up your canned soup or make a fresh soup for dinner!

Oximeter

Know your oxygen level

There are times when I am very out-of-breath.  Am I getting enough oxygen?  There is a way to check.  I bought an oximeter - that’s the thing your medical folk put on your finger to check your pulse and oxygen level.  I like to see the oxygen level above 95.  If I’m having trouble breathing and the level is below 95, I pause in what I am doing, relax, and I do “pursed lip breathing” and watch the number go up.   This little gadget lets me know how I’m doing, so I can pause, not stop what I am doing.  

You can get an oximeter in most drugstores, walmart, etc.

I got mine at Amazon.com

They tend to cost around $20.  They take two AAA batteries.  Many come with a carrying case and lanyard.  Those live in the junk drawer.  The oximeter itself fits in a pocket or sits on my desk.

Now I know if I am getting enough oxygen.  Peace of mind. . .

Exercise, Exercise, Exercise

You have heard the expression, “Use it or lose it.”  That may be especially true with deteriorating breathing.  When I was first diagnosed, the pulmonologist said he wanted me exercising, hard, for at least 20 minutes a day.  

That was a joke! I tried.  Not happening.  

Then spouse said, “Can you do one minute?”  Sure, anyone can do one minute!  “Then then next day can you do one minute more?”  Maybe.  It took a while, but now I use the exercise bike for 20-45 minutes a day, six days a week.  And I am in the pool for an hour twice a week.

Start where you can, and build from there.  Thirty minutes of treadmill are a good idea if you can’t wander outdoors.

I will admit that I enjoyed this bike during pulmonary rehab, and I bought it, even though it is expensive.

There are less expensive ones available.  This has the advantage of working arms/legs/both.

Some medicare plans include free gym membership if it has “Silver Sneakers™” or for $25/year if it has “Silver and Fit™”.  My local Y includes all classes in the membership.  I decided to try the Water Arthritis class, since it is less strenuous than Water Aerobics.  It works for me.  (See the post on swimming.)

What works for me is to be scheduled.  It becomes as automatic as tooth-brushing.  After checking my email and a few favorite sites while I have coffee, it’s time for the morning shows, and I perch on the exercise bike from 7 to 7:20 on pool days and from 7:00 to 7:45 on non-pool days.  I flick through the news, weather, and morning show channels, and the time goes by.

Find a plan that works for you and do it, even when you don't feel like it.

Does exercise really make a difference?
My pulmonologist seems surprised that I can do as much as I do, given my "Very Severe" pulmonary function test results. He credits the regular exercise with making it possible.

Having trouble breathing today?

Maybe it's not you -  it's the air!

When I find I’m having a bad day, breathingwise, it feels like the beginning of the end.  But is it?

There’s a website that I have found useful to check the local air quality.  Maybe it’s not me - it’s the world.  airnow.gov allows you to click on your location in the US to see today’s air quality.  

The maps are color coded, with green being “good”.  Yellow is called “moderate.” The definition from the website is:  MODERATE:  Air quality is acceptable; however, for some pollutants there may be a moderate health concern for a very small number of people who are unusually sensitive to air pollution.  but I find that “moderate” means I’ll have a tough day.  Knowing that, I plan my day.  Maybe more breaks.  Simpler meals.  

For me, it’s the ozone.  Particles are not a major issue in my very rural area.  But when the ozone moves into the moderate level, it’s going to be hard to breathe.

Some people have trouble when it’s a high-pollen day.  Here’s a website to check that:

http://www.pollen.com/allergy-weather-forecast.asp

Did You Take Your Meds Today?

Tricks to keep track of meds:

Many of us have meds for morning, for evening/night, for when needed, in addition to meds for other conditions.  Did you take your meds today?  As we age, it becomes easier to be forgetful, so this is a valid question.  There are lots of tricks to keep track of meds.

Standard pill boxes.

You can load the compartments for several days, a week.  There are containers that have AM-Midday-PM compartments.  You fill them in advance, and take them when scheduled.  Do not close the lid after taking the meds, and you can easily see if you have taken them.

                         

An alternative to those boxes - A use for old pill bottles: on Sunday, I set up my pills for the week, with seven pills for each bottle, using an old bottle for each type.

Self contained inhalers for once or twice daily use.  

When I open the package, I use a permanent marker to put the date opened and EE (if the count is Even in the Evening) or EM (If the counter should be Even in the Morning).

Inhaled capsules.

If the capsules are in a foil packet, when you get out the packet, use a permanent marker to put the day of the week it should be taken.

If the capsules are loose, they can go in the standard pill box or in a weekly pill bottle.

Inhalers, like Pro-Air or Albuterol.

Some of the newer, more expensive ones have a counter.  Mine don’t.  You never want to discover your inhaler is empty.  Also, I have been told that toward the end, if you haven’t been keeping track, the medication can be exhausted and all that is coming out is propellant.  One suggestion is to use a rubber band to hold a paper and a golf pencil on the inhaler and put a mark each time it is used.  Myself, I can’t be bothered.  I get my meds overseas, and the inhalers are less than $5 each.  I just weigh them with my kitchen scale.  I exhausted one inhaler, and it weighed 22 grams, so when an inhaler gets to 24 grams, there may be plenty left, but I just get a new one.