653 Days And Counting...

Well, well, well, it has now been 653 days since my surgery, and I am doing well.  I am not cured, I will never be cured, but I am free!


I am free of the oxygen hose that I used to need to keep me alive. No more fish flopping around out of water unless I do something really stupid like vacuuming or cleaning house.  Ha Ha. Just kidding.  Ok, well, not really. I have used the vacuum cleaner several times. Especially since we got a couple of new cats; one of which has long black hair.  I still resist dusting because it affects my breathing when there are particles in the air.

I have even climbed staircases a couple of times. Sure, I huffed and puffed when I got to the top the first time, I even had to sit down for a spell, but after a couple of minutes I was able to stand up and walk away....  right to a restaurant where I sat down and ate a nice delicious meal.  I have taken a couple of long steep stairways, short wide stairways, groups of stairs.

I can go out at night now and not have to worry about running out of oxygen. I have color to my skin once again! I actually grew my hair out and can now reach up with my arms and ponytail it up high on my head once again.  Reaching up with both arms has been an issue of mine for a long time before surgery, and of course after surgery it wasn't even allowed for a while.

Before surgery I could have cared less whether I had brushed my hair, and because I was a hairstylist for about 30 years prior to this, it was a huge issue for me, and a very depressing situation for someone that likes to appear "put together" at all times.

I even wear real clothing now, during the daytime hours (most days, that is). No longer are sweat pants and T shirts my staple wardrobe. I even bought pants with a placket front rather than elastic all the way around. Sounds weird but when a person can't breathe one thing that becomes apparent is comfort and anything that is binding becomes the devil, and that includes bras, too.  And no one wants to see that....believe me. Not even myself. I still think of myself as a svelte woman in a tiny basic black (or red) evening dress in 5" heels.  Not happening. 

ok, I really don't look like this on the outside, but I still do, on the inside.

I have worn heels (boots with 1.5"heels) several times, but I have found that heels take the breath out of me, even today. It is much better than before, when just standing and holding my own weight upright for any length of time left me breathless.

So many things I take for granted these days. And that is good, because even though most people consider taking things for granted only leaves a person susceptible to a let-down later, for me, it is a boon!  If I am taking things for granted, it means that I am no longer constantly having to adjust my life for my oxygen intake.

Don't get me wrong, I am not completely free. I still have an oxygen tank here at home, but my consumption has dropped considerably, and the only time I use O2 continually is when I am working out at the gym, because the very last thing I want to do is to rob my body of good clean oxygen when I am exercising, especially since my form of COPD is the type that causes my oxygen saturation to drop in direct relationship to my activity level.

~~~~*~~~~*~~~~*~~~~*~~~~*~~~~*~~~~*~~~~*~~~~

It's January 9^th 2014,  I am now finishing this post because time has elapsed and something new has come up.

It is time to pay it forward.  A colleague of mine has received some information regarding her own pulmonary adventure, and now she's about to start her roller coaster ride...

 ...And I want to be there for her when the ride comes to it's first resting point.  I didn't mention that this roller coaster, keeps going, did I?  Well it does. The ride goes on, there's just no get-off points. Sometimes its those small, smooth long humps (and those are our goal), sometimes it dips and drops in a nice even undulating fashion, then there's those high ups and downs, the ones we crank up our oxygen for, and then there's the Gforce types, the ones that twist and turn and sweep your breath, leaving your head in a spin.. For those, we have Zithromax......!

Ankle Wraps

Life with a Symbiont

Never assume anything. Of this I have learned.

In the past several months since I have been using O2, I have had to live as though I had a symbiotic being with me most of the time.

The only time I am free from this symbiont, is when I sleep and in the early mornings (on a good morning that is, only on a good morning). For some reason, I have been blessed with my emphysema, if that’s possible. It seems that just about everyone I know that lives with “oxygen requiring COPD,” has a symbiont like me, but requiring it for 24/7. I have never needed it for sleeping. It seems that everyone else needs it at the very least for sleeping even if they do not need it during the daytime, but they still need it for sleeping. For me, it is different. When I started exchanging information with others, whether in Pulmonary Rehab or in our Better Breathers Club (discussed later), I was astonished to find this out, because I assumed we were all pretty much alike. I had assumed so much that when I saw the looks on the faces of the respiratory therapists at my mention of not using 02 at night, I figured I had better ask someone about it. I mean, maybe I was wrong…. Could that be? Me? WRONG? I do seem to use a lot of air!

I run at 3 litres all the time when I am with my symbiont. Others I know are running at the same or even lower volumes of O2, but they still need it at night. I go through so much that I cannot rely on those cute little teeny tiny tanks, the petite ones that might actually be camouflaged as a purse or as hair spray. No not mine, the way mine looks, I could only camouflage it if I were to wear a weight belt, wet suit (or shark suit), flippers, and be riding around on a boat with a spear gun.

So the very next time my “Air guy” came over, when I mentioned it to him, even he kind of looked at me with a strange look.

So he said, “Let’s look at your paperwork. Let’s see what your prescription reads like.” So I got my original paperwork out and we looked at it. He even mentioned he thought most people had it for 24/7 usage. When we looked at my paper work, there it was, clear as the printed carbon copied font.

My Rx is for 16/7. Hm. 16 hr certainly is not 24/7. My allowance is for 8 hrs and certainly, it is not during the day when I am active. And certainly when I put that pulse oximeter on my finger at night, and read 96-97% (without air) I am doing OK. Even when I wake during the night as I reach out from under the covers (trying to move as little as possible), pushing the rubber button that activates my little unit spilling light into the darkened room, the reading I get when my finger is pushed in, usually runs between 95 and 97.

Of course, my oxygen is not that high when I go to bed. When I turn off the oxygen at the big unit, coil the hose up and put it away then walk into the bedroom, my oxygen saturation drops to about 87, which is certainly a “calling” for O2. But when I sit there in a nonmoving state my saturation climbs right back up to a normal level on its own, and if I happen to do some yoga breathing, it rises quickly. And providing that I don’t have to get up and walk around they stay high all night long. So I have never used O2 to sleep with, like so many of my friends need to do.

So this alleviates me from becoming wrapped up like a hose mummy in bed while I sleep. One of the good things about this fact is that it means I am not mummy wrapped 24/7 because I would be if I required the O2 at night. Luckily for me I only get wrapped up 16 hr per day.

I am the Queen of wrap. I can find a coil in my air hose, like a mosquito can sniff out carbon dioxide, like a drug sniffing dog can scent cocaine, and with slippers on, I can scoop up a coil; faster than a bubble can rise in a glass of Pepsi. I can usually feel the cord go around my ankle so I have adopted a certain leg flip that kicks that coil right off my foot as I walk….or so I think. I swear I can feel it fall off and then I take another step, and there it is wrapped once again around my ankle. Again, I flip my foot, this time with a little purpose involved. Next step, it’s still there! Lifting my foot I try to back my foot out of the coil, and then my slipper falls off, and it is STILL wrapped around my ankle! When I finally do kick the coil off, when trying to get the slipper back on, and I usually picked up that damn coil, again. If I reach down to physically remove the coil when I grab it, the line morphs into a straight line, no coil showing anywhere, but the moment I drop the line and take a step, there it is! It‘s enough to drive a person wild! Then it hits me, it’s a symbiont. I need it, like it needs me.

So I figure that the slippers (scuffs) cause this, and I vow to wear my cross trainers from now on. Nope, my cross trainers not only can find a coil, but while one foot hugs a coil the other foot steps on the hose and then both feet are involved.

I must say that sometimes walking out of the kitchen with a bowl of soup, a spoon and a glass of water, can be my undoing, if not just the bane of my existance.

Someday, someone is going to come home and find me wrapped head to toe in my oxygen hose, my food and water just outside the reach of my fingertips , and my curses will be ringing through the air, loud enough to cause the neighbors’s dogs to howl. My symbiont runs my life.

But I get my revenge when I sleep.

I have freedom, because in my dreams I do not have COPD!

Ha! Take that, you dirty symbiont!