96 Days after LVRS

Hello, I am posting today because I want you to know that I am doing very well.  In fact, I am doing so well, that I run out of time each day, and this blog is generally the last thing that comes to mind. I am busy running errands, working out, and basically doing all the daily things I used to do, only much, much faster, and without losing my breath.  One of my next posts will be about the things I have noticed and enjoyed once again, now that I have regained so much of my past life.

After surgery, I slowly started back at my past life of jewelry making and happily the custom orders started coming in. I am now back where I was prior to surgery (with my jewelry). I have approximately 4 custom orders waiting in the wings and I am about to start gathering the parts for my next one now.

I just finished two custom jobs and got them both shipped in one week. Both recipients are very happy. I really get great feelings of accomplishment each time I finish a piece, especially now, considering all that I have gone through.

As far as my surgery, now 3 month past, I am doing very well, and I continue to go to the Pulmonary and Cardiovascular gym to work out 2x per week, and I plan to continue this for the future. Yes, the future, no end time. It keeps me healthier, especially when one considers that jewelry is done pretty much in a sitting position. So for me, my workouts are now a part of life, and that's OK because without them I may not have much of a life at all, had I not gone to Pulmonary Rehab & LVRS.  I dare say my quality of life would be very poor.

I rarely use any oxygen at home now, though I do use it when I work out mainly to feed my brain the good oxygenated blood, a very important thing, however I do turn it off during chair yoga, unless I feel the need to use it, which is rare.  Chair yoga has been one of the surprises and awareness giving tools for me. I have learned some breathing exercises for lung capacity, that when used one can visibly watch the O2 saturation rise during the techniques!

~*~*~*~

So my plans today, I went shopping for some birthday presents, that I will now wrap, and then I'll bake a cake. Tomorrow, the birthday will happen, complete with our daughter's chosen birthday meal of BBQ'd hot dogs, which we will spiral cut as a surprise to her. She'll have a mound of presents to open, chocolate cake with white icing (another item of her choice), and then it is outside for fireworks!

Fireworks are a biggie for me, because in the past several years, while I like fireworks I could not stand to sit outside and endure the smoke. The lung pain of not breathing well did not bode well with me (I did not go on oxygen until last August, so I was still dragging my sorry butt everywhere, in pain and gasping for breath at the same time). It is hard to maintain any semblance of a normal lifestyle when one cannot breathe; everything changes. So this year is a real celebration! I will of course take heed of any smoke since I do not want to repeat the damaging effects on my lungs. Now you know why I have been so remiss on this blog.... I am free! I am mobile! And I run out of time each day! Ok, the eggs are now at room temperature so it is time to make cake! As we say in chair yoga each week: Ohmmmmm...... Namaste.

Eating My Way Through Seattle - The Night Before Day One

photo by Natalia Tsouklava.

This ship is now leaving the port.

As I approach tomorrow I have to look back at where this all started, back in July, when we first heard about LVRS surgery. At that time we actually thought that LVRS would be occurring shortly after we were told about it. Then we found out that I would need to be Graduate from Pulmonary Rehabilitation. After I graduated from rehab, we thought we’d be hearing from the surgeons rather quickly, but things work the way things work, and the ball didn’t get rolling until February. I actually think this is better because we didn’t have to worry about any inclement weather like freak snowstorms (like that one last week, for example).

But here we are, and tomorrow I roll into surgery ready or not, no turning back now. I have showered with the specialized surgical soap that the nurse gave me, so surgery is ON.

We spent the day at the hospital having blood draws, pre-op appointments, including that soap mentioned above, to shower with tonight and again in the morning prior to coming in. I also had another series of CTscans this morning. Tomorrow check-in is at 8:15 and they will be shooting me in the spine with an epidural for pain management, which I will be using for a while after surgery. I probably won’t be doing too much tomorrow other than groaning and getting pushed, prodded, gauged, metered, and "temped." But tomorrow is "Day One!!!!" Yay!!!!

The hospital will remember us, as the ones that will stink up the whole ward with Indian food! They all know that we plan to be having it for dinner (hubby will be bringing it in as soon as I feel up to it!).

It's a good thing they serve Indian curry in the hospital cafe, so they shouldn't be too surprised to have the scent up in the ward at times.

We spent last night and tonight eating at a great Italian sub sandwich shop called Sarducci’s that also serves crepes, a discovery we made in the university district.

They even bake their own bread daily and all of their sandwiches are made from it. Last night I had an oven heated Italian Sub and hubby had a meatball sandwich. It was heaven on wheels for both of us, especially since our favorite Italian sub shop went out of business at home.

Today at the hospital we were told that I should eat a dinner of good protein tonight, and then of course, no food after 11:00 pm tonight.

So rather than eat extremely spicy food from an Indian restaurant, we decided to go back to Sarducci’s again and try different sandwiches, saving the Indian food for after the surgery. This way, we could also get some of those great looking homemade crepes for dessert.

That was the ticket! Hubs had a Hot Pastrami sandwich and I had a French Dip; and from him, all I heard were a couple of mm- mm’s and a growl when I got too close. My beef dip was very good, but I think I preferred the Hot Italian sub I chose last night better.

Our dessert crepes both have strawberries, his with ice cream and mine with whipping cream, both have chocolate syrup dribbled all over and mine also has sliced almonds. (I also got a growl when I got too close to his crepe, so I kept my distance and watched him chow down on what looked to be a delectable dessert).

Now, it is about 8:30pm, and I am going to finish this post and start thawing my crepe (we brought them back and immediately froze them to keep them from getting too soggy) and then I am going to welcome in “Day One 2012 with style and strawberries, almonds, chocolate, and whipped cream on a crepe, and tomorrow life for me begins again.

By lunchtime tomorrow I should, be done, and all hosed up, learning how to breathe again, ready to kick up my heels once more!

Sleep Aways and Face Nooses

Sometimes I wish I would just sleep the time away.

It would be so easy. No air hose to get caught on the corner of the hutch, no having my head yanked back, my ‘face noose’ tightened around my ears and nose when I come around the corner and in sight of my goal, whether or not I am carrying something that is heavy . So maddening it is to know that I have ample length of air hose but I still cannot get where I need to go, all because of a rug’s corner, a wheel, a dresser knob that seems to jump down and grab the line every single time I walk by. Sometimes it's my own darned leg! How does this happen?

This air line can wrap itself around my leg before I even enter a room! And if I have my shoes on it always seems to lay itself down just before my foot steps in acting like a bear trap, set and awaiting my ankle’s arrival so that it can jump up and snap shut on my leg affixing it within its grasp.

Earlier, I was in a great mood, happily discussing whatever subject came up, and as the day has continued onward my elevated mood has swooped down lower and lower, far enough down that when I was in my laundry room transferring my wet laundry from the washer to the dryer, with my air hose and cannula hooked onto the dryer door, because after I walked all the way in (I even checked my length before I left the adjoining room) my air line got caught anyway and ended up stopping me dead in my tracks just 2 feet shy of the washing machine, causing me to doubt the actual length of my line even though I have been able to walk that far many times in the past.

I transferred my laundry in the actual room air, slowly but surely squeezing any remaining oxygen left in my lungs out of them, and leaving me gasping for breath. I tried to grab the remaining laundry before I had to madly grasp the cannula as I bent down, fumbling to fit little clear rubber ends into my nose in my ridiculous panic to get oxygen. It can be so maddening at times, because I was sure I had had the length available. After I finished stumbling over the plastic laundry basket that stood between the dryer, it’s door that held my cannula draped over the corner, and my feet as I was bent over to reach it, I vowed to backtrack the air line as soon as I had my breath back.

I did, and I found that a small loop in the air line had caught on the bottom of a door causing the air line to withhold about 10 feet of vital oxygen line that would have allowed me to reach my goal and not have to go through the painful agony of going breathless once again.

After experiencing the battle with my face noose and my oxygen deprivation, I had my fourth experience (in a row) with the cat who was meowing to get me to let her out the door, only to balk at the last minute while I stood there watching her with the slider door held open with my hand, I swooped down and picked her unsuspecting body up in my arms and swooshed her out the door. In about 3 minutes, she’ll be begging to be let in again, I’ll bet.

The clock ticks on.

Showers and Surges

Castle Geyser in a steam phase

I have now sunk another step. The shower. I now need oxygen for a shower. Well, it is not that I require oxygen, but I have found that if I want a comfortable shower, I had better climb into the stall with the hose on, or it becomes very uncomfortable very quickly.

The warmer the water is, the more steam there is. The more steam there is, the more moisture gets inhaled into the lungs and let me tell you, when a person is not getting good airflow a little moisture is definitely not going to help any.

The same thing happens when we go outside into the frozen air. To have icy cold air get sucked into the lungs, like with asthma, the lungs do not relish the treatment we give them, and with asthma sometimes they rebel with an immediate clench, as an asthma attack.

Since I am not the type that has immediate asthma attacks unless I have inhaled noxious fumes from stuff like naphtha (spot remover), I don’t usually recoil. My attacks seem to come on in a more gradual way, none the less, they still arrive with regularity when I change atmospheres too suddenly especially when there is a wide degree of temperature change.

Well, in the shower it happens too. I have known this for a long time and in the recent year or so, it has become much more apparent and I must be very careful.

I had not had a good shower in a very long time. It seems that the moment I get into the shower my strength starts to wash down my body and start seeping down the drain under my feet. Washing my hair using my arms especially up over my head zaps me faster than anything else, and it feels like I need to get done as soon as possible and just get out so that I can sit down to recollect my breath.

My shower has the little benchy thing, though it is covered by a myriad of bottles and little jars of shampoos and conditioners in about 14 different flavors, brands, types and scents, and this is a humorous thing since there are only two of us using this shower and one of us doesn’t even have his shampoo on the benchy thing anyway. But even if all of those bottles were not on the benchy thing, sitting on it while the water is flowing really doesn’t offer me any relief. The water at that level (when sitting) then hits me in the face and the temperature would be the same anyway.

So here I am, attempting to sit on the benchy thing, bottles spread apart threatening to scatter this way and that way. I find that most of them are half empty, and why I don’t throw them away, I cannot say. Perhaps I have separation anxiety. Perhaps I know (inside) that if I do throw them away, I will have given in to the benchy thing and will now have to face my disability once again, because as soon as I clear even 1 square inch, I replace it with something new.

Unfortunately, my most recent bottle of shampoo is a rectangle that sits on its flat side with the pump on top so that just doesn’t work down there on the benchy thing, so it ends up on the ledgy thing that looks like it is supposed to hold a bar of soap except that if one tries to put a bar of soap on it the bar inevitably slides right off, slithering down to the benchy thing then onward to the floor of the shower inevitably denting a corner up. And there nothing worse than a dented bar of soap. They just don’t work right when they’re dented.

My shower even has the “hold yourself upright in the shower” bar, made for those that have had a little too much to drink or for when their mom is borrowing the shower… which in itself is a weird concept, though I will admit to having it happen before in my bathroom.

I have had to resort to holding that bar, but not to keep myself upright, more like to give myself a place to hold onto while I lock my elbows so that I can stand in the stream of water without having to support all of my weight. When I am short of breath just holding my own weight up can be taxing on my ability to breath.

So I attempt to give myself some relief while the water tries to drown me with its intermittent droplets of torture and steam attack.

I used to love getting into the shower where I go into my make believe world; a place where I could be without everyone in the household constantly asking me questions or making requests, even if my reprieve would only last for several minutes, it would seem like an hour to myself. And when everyone was gone from the household I could sing at the top of my lungs and not care whether anyone walking by out at the sidewalk at street level could hear me. And I could cry and no one would be the wiser. Try that anywhere but in the shower and someone will always inquire as to what is bothering you.

In the shower the eyes can get red, a person can cry, (as long as they’re not wailing too loud they can pass it off as singing) and blame the red eyes on shampoos getting in them. And if I had the freedom of time on my hands, I would love to stand in the water after finishing all the usual things we wash and condition and just allow the water to run on me and then place myself in a masochistic state as I would slowly raise the temperature one increment at a time until I could almost stand it no longer. Only then would I emerge from the shower all red and radiating. There was a time when I would leisurely dry off and then walk throughout the house nake…oh never mind.

Until I started taking my air into the shower, I would get in and immediately get short winded but I could deal with that as long as I didn’t move. Of course, it’s hard to shower without moving. My first course of events has always been to wash my hair and it is a hard habit to break. But raising my arms is the hardest thing on my lungs, and that would be where the hand rail would come in.

I would have to hold it as though I was using a walker just to try to allow myself to relax, and let my heart beat drop, something difficult to do when a person’s body is reacting all on its own to hot water and even worse, steam. There have been several times when I have actually stepped out of the shower dripping wet just to sit on the commode to catch my breath…. And then I start to shiver. Oh, did I mention that any sudden shift in temperature can fire up the systems to cause a shortness of breath? I’m damned if I do, and damned if I don’t.

As a hairdresser, I was always seeking the perfect combination of hair products. But not anymore, no not anymore. Now, not only do I use whatever is in there, I could care less how it makes my hair feel. I wash my hair as quickly and easily as I can and get the heck out of the shower.

There is no time spent drying myself anymore. So soft towels slowly moving over my skin, no time spent covering myself in emollients to keep my skin soft. No, I have no breath to do that anymore. Now I step from the shower directly into my faux terry cloth robe and tie it at my waist, and immediately walk out of the shower and into the cool bedroom where I can immediately sit on the edge of the bed to collect myself and drip dry inside the robe.

I only spend enough time wrapping my hair in a towel anymore and I am already short of breath, because even with the air on I still get short of breath. I usually return to the bathroom after I have regained my breath, and it is on that trip that I use the deodorant, comb out my hair and if I still have my wits about me I might even use some cream on my skin. A far cry from what my method was just 3 years ago. Back then, I would disappear into the bathroom for a shower only to emerge 45 min later all made up and ready for the blow dryer. Not anymore, no, not anymore.

I found out about the air in the shower one day, when I was talking to other COPD people at the gym and one mentioned the hose in the shower. “Really?” I said. I thought about it. Some of these people are in need of O2 24/7, so how were they managing the shower?

I found out that there is virtually no reason not to take the hose in with me…. Yea, why not? The worst thing that might happen is that water might run backwards down the outside of the hose and puddle on the floor. Heck, that happens on its own if I don’t have the door completely sealed off, so I tried it.

I had my shower back. Well, at least I had it back to about 2 years ago. But that was fantastic! It felt so good to have the ability to breathe again in the shower. I can wash my hair at my leisure now. I still run short of air, but it is not like I am drowning anymore! I am so happy!

I can wash my face and actually put it directly into the shower stream to rinse it again. I haven’t been able to do that for over a year. I mean who in their right mind would put their face into water when they cannot breathe? It becomes a vertical water boarding immediately. And the worse thing is, I would need to leave it in the water long enough to rinse the suds off. When I can’t breathe, and can’t get air, there is no exhaling or holding the breath, so it is immediate body panic, an automatic thing…the innerspeak I wrote about in the past becomes an InnerScream, a screaming of my own voice in my head, ironic, since I would not even have a voice if I tried to actually scream at that point.

Luckily the InnerScreaming stops as fast as it starts once my head is withdrawn from the water stream.

Now that I have my hose in the shower with me I can actually put my face in the water again. Of course I do have this “thing” on my face, so lathering has its hinderance, but that’s OK and I will put up with it. I can always wash my face in the sink without my cannula on if necessary. And oddly, I can still neti – pot, but it’s probably because I am bent all the way over on my elbows and leaning on the sink.

Did I mention that I have not brushed my teeth in a standing position in years? I am always on my elbows at the sink. Even on a good day, I can start standing, but with my 3 min timer on my Sonicare, I can last about 2 min before I need to sink down to elbow level to achieve solace.

My elbows have turned colors over the years. They now have what appears to be purple bruises on them. This is from always leaning forward on them. I sit in a tripod position most of the time. This happens from sitting off the front edge of a chair or the sofa just to keep my airway open and as straight as possible. My legs above my knees also have dents worn into them from my elbows always being there. There is no slouching back anymore, and for a while before I got my oxygen, there would be times when I would be so short winded especially when trying to reach my car, that I would have to sit down and almost arch my back in the car’s seat just to try to achieve that same angle so that I might catch my breath, since leaning forward on my knees is impossible in the car.. It would remind me of the folks that have to live in a chair and have a rod in their back to keep their spines straight and not allow the natural scoliosis curving that takes place when they are in a chair 24/7. I felt like I had a rod in my back just so I could catch my breath. Not anymore though, not since I got my O2.

Things happen to a body that continually goes through these motions. One has to have bladder protection, because when you cannot breathe and get to the point where it feels you will pass out if you keep on going….guess what also happens?

And if you are just trying to get the groceries from the car into the house… well things can happen.

For me, I can always get there, but it is like a surge that comes over me after-the-fact. I can make it to my front door arms laden, with multiple grocery bags, but after I get inside the house and set things down on my counter, that is when my body then catches up with me, because I have been operating on borrowed time, on auto pilot. Pushing the limits of my body just to function as I should normally operate, I must lean on the counter and immediately do Kegel exercises. Sometimes is works and sometimes it doesn’t. At times, I have been known to make it into the house and then into the bathroom before the surge sets in. I can be on the john when the surge hits, and by surge I do not mean what you think I am referring to.

The “surge” is my body reacting to a loss of oxygen, in that even though I am in a sitting position, my body thinks I am still pushing the envelope, and the inner speak starts up as though I have reached the end of my rope, and am dangling there ready to drop off. But because I lived through the 60’s and the 70’s and survived various forms of paranoia, these surges that rack me when I am in the bathroom in the darkness, do not allow me to panic as they might some one else. I can get air, I feel the air moving in and out, but I cannot relieve my own pain. I must wait for my body to do it for me. Of course, I have always survived. Each time, as long as I relax and wait, my bearings return and then I can go out and put my groceries away. When I mention being in the dark, it is because I am …in the dark, with just a crack of light coming from under the door.

When I am experiencing this, the very last thing on my mind is the light switch and because it is an internal bathroom there is not light unless the switch is flipped when I enter the room. And so far, I have never flipped it when I am in this condition. And this tells me just how dire my situation seems when I am surging like this. It’s freakin’ sad.

But I do survive.

In fact if I am in public I will refuse to do something that I know will cause this surge, something like a long flight of stairs, or to walk up a hill for example. To this day, I have never passed out. Never. And if I did pass out, I am pretty sure that I would just start breathing on my own because that is my nature, I stop moving and my O2 stats immediately start to rise back up.

I have never seen stars and I have never seen my fingernails or lips blue either, so I know I am not blacking out as another person might do, and as I might do had I complete loss of oxygen and turn blue. So far, I have never needed hospitalization from an illness. Many of my friends cannot say this.

So I go on day after day, sometimes swinging from the end of my rope.

But I do know one thing. I cannot converse when I am like this, I cannot discuss, nor communicate other than by looking into eyes and maybe a head shake. I have likened it to labor pains when one is in transition. When I am like this I am in the throes of a huge bodily labor pain that sweeps my attention to the innerspeak within and as it wanes I can feel my abilities coming back. Just like a labor pain. It’s all an event of natural timing.

Freakin’ sad.

The Countdown

I find myself at a lack of words right now

..and that doesn't happen very often.

What this means is that I am feeling a bit overwhelmed, because I just found out that I am going to Seattle on Mar 5^th, for the day long testing.

The countdown to bigger things has begun....

Day One draws near.

Snack Me.

My test was today, Thursday Feb 16^th, 2012. This test is one of those long-named word diagnostics. I believe it was called a Myocardio Perfusion Test.

This was the dreaded Stress Test. Remember the one where I envisioned Regan flailing on the gurney, blood spraying everywhere?

Well it wasn’t like that at all.

I will admit to feeling bewildered for a little while. Especially when one considers that I was told that I had to fast: no caffeine, no nothing. All I could have was little sips of water. This alone is hard to bear for a person who regularly drinks double shots of espresso. Sigh.

But I made it. I was doing well until I checked in and was sent to the 3rd floor. As I was about to walk onto the elevator I heard my name called and I turned and there was my Golden Heart#1 (the one we'll call Susan, waving to me and wishing me well in my test! Out of all the people in the hospital, here she was, waving at me! Wow, and I waved back).

Of course, I had been sent to the wrong department. Then I was sent back to the woman that misguided me, and she redirected me. When I got to the correct department, they asked for my paperwork, which of course, I had none, since I was just sent there. So again, I was returned to the front desk a third time, and this time she sent me around the corner to the “booth.”

These are the booths that have a chair and a counter and on the opposite side of the counter sits a person at a screen with a key board, and stacks of papers and pens on chains, not the big flowers taped on their pens like at the front desk. You know you are entering into Accounting Zone, and you sit down and prepare to sign everything away, because even if your insurance balks at the last minute (you won’t know this for at least 5-6 mo. when the decision making actually takes place); you still need the procedure done today so it is very easy to sign everything now.

After signing 7 or 8 times I was asked to verify my birthdate, and then to extend my right arm outward and a plastic bracelet was snapped on and the tag cut off. I now belonged to the hospital, and was being directed back to the front desk for a fourth time.

The woman told me to go into a different room to watch a video about the procedure that was going to be performed on me. At this point I need to tell you, that it was only the day before, that I had found out that the test would take 3-4 hr to complete, so finding out about the video quickly became a new sources of bewilderment for me. Being sent in to watch a video of the procedure that was going to take place quickly became my 2nd source of bewilderment. A video? In my mind anything that takes a video to prepare a person, can’t be small. All this time I had thought that my stress test would be one of those treadmills tests that last about 45 min from going in to coming back out…..Nope, not today.

As the video started, my vision of Regan slowly entered my mind when the video talked about a machine hugging my body and that I wasn’t allowed to move at all for 15 min or so…. And these people would start shooting hypodermic needles into my IV… oh man… yikes….

I have to say that I am very lucky. I have discovered another Golden Heart in the Gym. We’ll call him John. John also works up in the Cardio diagnostic center that was conducting my test today, and he is the one that originally enlightened me yesterday as to the proceedings of my test and the duration of time it would last. John is familiar with the type of test that what was being called for. He discussed it with me and made it easier for me to understand the process before I found out this morning. So my only real surprise was the video, of course it had the visuals, and had I not been pre informed, I might have freaked out even more once I realized that I had to watch a video of the whole thing in the first place.

Once I got back in there, they gave me a gown with no discernable garment shape which had snaps all over it and I finally figured out the the snaps constituted the shoulders of the gown and was able to make clothing out of it.

Everyone was very nice, polite and friendly. I mean they had better be, I was in Nuclear medicine!

First, they IV’ed me and taped a Y shape port into the affixed IV line now taped to me and I think he injected something nuclear into me….. and once I was on hospital O2 (directly from the wall, something new for me), they snacked me. I was given cheese and crackers and cranberry juice, to get my digestion working to help move the chemicals through my system. It was explained that the food would get my organs working and they would be farther away from the heart and not impede the images, or something like that. OK.. Then I waited about 20-30 min for this to take place.

I watched some scenic flip book travelog on TV, about Oregon like the shows that air on Easter… Then all of a sudden John showed up!

We talked for a bit and he handed me a remote control for the TV. He let me know that he had talked to my tech and that they had tried to inform my Dr’s in WA, that my high speed pulse may not need the drug push to elevate me, but it was to no avail. My surgeons in WA have a protocol to follow, so I was good with that. What it meant was that I would not need to walk on a treadmill to elevate my pulse, and that they’d inject me to do it.

So John made sure I was comfortable and he went on with his daily work. It felt really nice to know that there are people that I see down on the first floor in the Gym that actually go out of their way to stop in when one of their charges is up in the hospital having testing. Who does that? My Golden Hearts do!

So I watched Star Trek New Generation on TV in the waiting room.

My tech came and retrieved me from TV and I was taken into the testing room for images of my heart. Things were taped to my body (they look amazingly like the snaps on the shoulders of my gown), and then I was laid back on the table, and the big machine was moved up over me. It lasted a total of about 7 min of exposures. No problem, I almost dozed off. Then I was told that this part had now finished and I was wrapped in hot blankets and taken back out into the lobby for more TV.

By the way, I happened to have been the only person there today, so the remote was mine, all mine.
I waited another ½ hr or so, before they came out and retrieved me again. This was the big one, where they would be injecting me with things that would speed my heart up.

This part of the test is where two techs work as a tag team, one on a screen the other running the test. Together they work in tandem, and they have to be on the ball for this. Watching and timing everything perfectly or it doesn’t count. And believe me, when it involves a persons heart beat you really don’t want it to “not count.” These techs were savvy and they were both very nice women and we all got along quite well. There was laughter and bright attitudes which I found very helpful.

I’ll tell you this about the drug they used, the techs said it was referred to “Exercise in a bottle”……. And I say “Boy Howdy, isn’t that the truth!”

They gave me one drug that pushed my heart beat up to the speed they needed and when it was obtained they then injected something else (don’t ask me). After a prescribed time it was over….But during that time, I was instructed to inform them every single feeling I had especially chest pain, tightness, arm pain, jaw pain (all those scary symptoms they advertise on TV) plus anything else I felt during this time…

Well, I feel everything..so I wonder just how much they really wanted… and I let them know when it felt like I could feel all the nerves in my face wake up and wiggle. And when my scalp tickled I told them too. But I had none of those dreaded symptoms so that was good. It was quite strange to feel my heart beat inside my chest without my having done it with my own movement on a treadmill though.

Since I do run at a fast heartbeat this test was quite easy for me and I was up at the required heartbeat very quickly with no need for the atropine that is sometimes used to boost the heart beat speed up. I am glad for that. I also didn’t need a nebulizer treatment that many do need since some of the drugs interfere with breathing. I sailed through it. My O2 saturation stayed up the whole time!

After my heartbeat race, I waited in the room for my heart to go back to normal, and then once again I was taken back to the waiting room, but not before we discussed websites, blogs (I told them about this blog) and jewelry making. When they returned me to the waiting room they told me that this time I could have coffee!

YAY!

So I was ‘snacked’ once again, in addition to heaped with wonderfully heated blankets. This time on TV, I noticed that “The Talk” was on and that told me that one o‘clock had been reached. I saw no clocks anywhere on the walls though I am sure that every screen had the time even if it was 24hr time or gmt.

Another half hour or so and I was retrieved a third time. We went back to the first room of image- taking and repeated the process so they could see how my heart operated after being stressed.

This time I laid down, the same as earlier, but for only half the time and then the bed was lifted and I completed the time in a sitting position, and then it was all done.

It did take quite a while, but none of it was as bad as I had envisioned.
It was just . plain . weird.

I walked out to my car, my day now completed and the only residual effect was that my arm vein hurt a bit, and I had a slight headache, but that’s nothing.

I came home, took some Advil, rested for a moment, and then I called Seattle to inform the case manager that the test had now been completed, and went back to my life….

I had fantastic people working in me all day long, And they really helped me get through a test that may have been a bit frightening and I have my now 3rd Golden Heart, John to thank for giving me the “head’s up,” before I found out the hard way.

And finally, I will always have a soft spot in my heart for Tillamook Cheddar Cheese, Premium Saltines and Cranberry juice! A wonderful way to “Snack Me.”

I really don't like fasting.

My Golden Hearts

I have to say that there comes a time in our lives when we realize that there are true Golden Hearts out there. These Golden Hearts are not the ones that are closest to us, they are Golden too, but I am referring to those that devote their lives to others, especially in their lives and with their professions.

Most people that choose their professions and lifestyles do so for the money, the income that it brings into their families and lifestyles, so that they can enjoy their chosen existences. And if they don’t get the income they feel they deserve they will drop their profession of choice like a hot potato and walk away indifferent, if not nonplussed, seeking a new outlet for financial gain. Don’t we all want that, to some degree? Not necessarily. But a very high percentage do.

Many people do what they like to do for their profession even if it doesn’t bring them the highest possible income. Many do what they love to do and that’s to help others.

No one ever talks about what happens when a person gets to the point where they rely on others to help them.

Let me tell you about my Golden Hearts. Two times in the past several weeks others have come to my aid in ways that may seem too subtle or non-issues to most people, but to me, they became my Golden Hearts at that very moment.

Last week at the Better Breathers Club, I was sitting in my chair listening to the guest speaker talk about lung issues. We had a large group and most of the chairs were filled. The Better Breathers Club is facilitated by our staff at the Cardio Vascular Wellness Center, particularly the Pulmonary Rehab group. They set it up, they do the scheduling, they bring in food, drink, prepare the room and 'run' each meeting. They do all of this in addition to maintaining their regular scheduled daily work load, and are quite busy on any given day.

I was sitting in my chair and as the speaker was discussing the program I realized that I felt some burning in my chest. Nothing big, but it was the tightening I sometimes get when I am not getting enough air. I didn’t realize it at first, but after a couple of minutes it dawned on me that perhaps I was running out of air. I really didn’t think it possible because I had already switched tanks earlier after spending 2 hrs working out and at chair yoga. I had been halfway to the café when I felt this before and decided to return to the Wellness Center right then; rather than continuing to the café in hopes that I wouldn’t run out there. I knew that as far as I went outward, I would have to walk that same distance back to get more air and that wouldn’t be good for me. So my lunch partner sat down and waited while I returned to swap another tank before we went out to eat.

I thought I had been good for the rest of my day at the wellness center with my new tank of air. Sitting in my chair, I pulled the cannula out of my nose and held it up to my upper lip and felt no flow of air….

In a flash my brain is calculating how many steps I have to go, carrying the tank back to the gym where more air is located…. In my mind, my tank had now become 3 X’s heavier than it was before...

So that means I’d have to carry it out of the meeting room, down the hall past the lobby and through the big double doors, and down another hall to the room adjacent to the wellness center area where the tanks are…. I knew I had the strength to get there, but I would be in very poor condition when I got there, and that it would hurt, and I would need to sit down for (I don’t know how many) minutes until I recuperated. All of this went through my mind in a flash, just as it does every time I run low on air.

Sitting there in the meeting with this realization, and then calculating distances through my mind, I started to set myself up. I reached down and pulled the flap down on my tank to view the regulator to check my level of O2 and saw that it was down deep in the red zone, meaning it was empty.

This was not going to have a good outcome, because not only would I have to get up and weave my way out of the room during the presentation, I would have to endure the distance, too. I have to say that the very last thing on my mind is to have any conversation, much less, interruption or anything to cloud my mind, because at times like this, I am suddenly cast into survival mode.

Most people do not know this, and are unaware of how this works when a person is out of air. Sometimes the mere thought of it is enough to cause the feeling of not having air, even when a person does have air. The big difference is that when officially out of air, confusion will set in quickly, because in survival mode what is most important is getting what a person needs as soon as possible to get them back to where they are supposed to be.

Out of the corner of my eye, I noticed movement on my lower right side and I looked over and there was my Golden Heart, let’s call her Susan, and she was talking to me.

She had been sitting in the back of the room, enjoying the meeting as we all were, and I guess she had seen me pull my cannula out to check the airflow, and look my regulator, and she jumped into action without saying a word. She knew what to do and didn’t wait for me to look around with “that look” in my eyes. She notices things! She follows through!

She knew immediately, and she came up to me, bent down opened my case for my tank and muttered something like, I’ll get you a new tank just sit right here.” I am not sure exactly what she said, my brain was already starting the grip of survival, but I knew what she was referring to because I had heard her say "another tank" and "be right back." And she was gone out of the door. About three minutes later she was back with a new tank of air, connected me up, and life continued on…

Not many people pay attention to the small things like that. She is a Golden Heart.

She made herself available, even though she had so many things to do that day, she actually stopped everything when she saw that one of her ‘people’ was about to be in distress. She averted my distress. How can I say thank you to her enough times?

My second Golden Heart was even more subtle than this one.

Another respiratory therapist, let’s call him Robert, was in the process of working with a new client. Each client completes the 6 min walk when they first come to Pulmonary Rehabilitation. This is how they are assessed for treatment and for therapy and for supervised exercise programs.

Before clients start each day, and during the course of their workout a series of tests and readings are made. After graduation from Pulmonary Rehab., we do our own testing, but while in pulmonary rehab these tests are continual and all results are written down and archived for future reference and for the patients individual plan for wellness and sent back to their referring Dr.s. Every person goes through this. And during the 6 minute walk each person wears a portable EKG and a pulse oximeter. All of these will be able to assess their needs, for oxygen and their level of exertion. The patient walks around the track while the Respiratory Therapist walks behind the patient pacing them at their rate of speed and take notes (I guess).

This particular day, one of the Respiratory Therapists, the one we’re calling Robert, happened to have a new client that he was working with, on the 6 min walk. I had been working out and it had been a particularly hard day for me.

Sometimes, for whatever reason, people with COPD will wake up with breathing issues that will follow them throughout their day. Whether it is air pressure, temperature changes, particulates in the air, who knows? But it happens. It can be very frustrating because a person can be having a fantastic roll of days where they actually think they are getting better, and then out of the blue this nasty disease will remind them that it is not so, in the cruelest of ways, by waking in the morning very short of breath. It can be very frustrating.

I was having one of those days. I had been doing great, getting lots done. My errands were easy to achieve, and I was looking forward to a great day, only to realize as I sat up in bed, that I was already short of breath. When I took my morning meds I had a hard time inhaling one of them. Hmmm. When I got to the gym I mentioned it and was told that others were saying the same thing. OK, so at least I am not the only one.

I did my workout as I normally do, adjusting it to my lower breathing threshold of oxygenation and I had found myself quite winded after my workout. I was sitting in the Pulmonary Rehab section taking a breathing break before moving onward to my Chair Yoga class, and well, I must have looked like I was in distress or something, because as Robert rounded the corner with his patient he looked at me and instantly became a Golden Heart..

He probably doesn’t even know it, but while he was working with his patient in the midst of his client’s 6 min walk, he saw me sitting there, looked me in the eye and shot me the thumbs up…… which I reciprocated by returning it.

You see, he was checking to see if I was OK, or if I was confused by a lack of oxygen, because he knows the pattern of a person who’s in distress. A person in distress may not seek help, in fact they may not respond at all, but by non response it does not necessarily mean that they are OK, it might mean that they are ready to flop over.

chair yoga

I fully realize that had I not returned his thumbs up, that Robert would have put his patient on hold to come to my aid; because that is what Golden Hearts do.

I have been reminded more than once now that there are people that actually have given their hearts and minds to those that they work with.

Two times now 2 people have stepped up to the plate without being asked. This is how I know I am in the right place, the best place for me and my breathing issues.

I find it comforting to know that I can move a single muscle, a flinch, a recognized nuance in a way that isn't right and if a Golden Heart happens to be nearby they will jump into action, whether it be to ensure that I can continue along, even if it is merely an affirmation that I am still here in the present.

Great people They are.

Time Warping

Tuesday, Feb. 7, 2012

Next Thursday the 16th of February, will be my final local test. As soon as I am done with that test I will be calling Seattle and we will be making the "all day appointment" at the University of Washington Medical Center. It will be an all day affair with another full series of Pulmonary Function Tests, another Stress Test, and any other tests they can find; including a nicotine test in case I still smoke and haven't mentioned it to them yet (ahem, not). After the tests are completed I will be meeting the surgeons and then I'll have my pre-op appointment. So perhaps we'll be driving home with a surgery date, too!

Here is comes. I am glad that I still have a week before the final test here because I want to prepare for it with more time on the recumbent exercise bike. I was told that for the surgery, I really need to focus on bicycling and arm and core building exercises... I say, what's left? Eyelid exercises?

Oh, and of course, the local test here is going to be a stress test, one of my most dreaded tests. No food, no caffeine, no nothing for 12 hr, only little sips of water allowed.

Sorry for the lack of levity tonight. I am pretty tired... waiting, waiting, waiting.

I know that tomorrow will be better. I will be spending 1/2 of my day at the hospital: working out for an hour, followed by an hour of chair yoga, lunch at the hospital cafe (which I hear is fantastic), and then after lunch it's the Better Breather's monthly club meeting for a couple of hours. So I will probably be a bit tired after all of this; but I am looking forward to it.

Slowly but surely I am getting there. It's funny when I look back. For so long I have been wanting to get this over with, now that I am actually looking at it happening, part of me wants time to slow down.

No Room For Wrenches

Feb 1st, 2012

Tools are good for keeping things maintained. Every tool has a place to be. Wrenches are usually numerous, and there are many types.

Each type has a use.

This is not about the wrenches we use to tighten things or to loosen things. These are a different type of wrench.

And do not mistake the term wrench to mean “to wrench something from one’s grasp” though at times this terminology can come inevitably close to what I am referring to here.

I am referring specifically to a type of wrench that has no use.

The throwing wrench.

The throwing wrench has no purpose but to be thrown. It has no nut to hold, no bolt to fit. It isn’t used for anything. It has no adjustor wheel on it. Ironic that for having no use in a tool box, nothing to fit onto, it probably has the widest latitude range of any of the wrenches.

Yes, the throwing wrench.

A throwing wrench can be of any size, too. It can be so teeny tiny that no one can even see it, or it can be so large that no one can ignore it. A throwing wrench at times can also be related to its cousin the proverbial fly-in-the-ointment.

But one thing is for sure, one cannot get by without feeling it or its ripple effect as a bystander, once a wrench has been thrown. For what goes up always comes down.

And let it be known to all, everyone gets a wrench thrown their direction every once in a while. If you say you haven’t ever felt that wrench, you lie…like a rug, or you actually are one that believes that denial is a river in Africa; or you are just plain oblivious.

Sometimes denial and obliviosity ride side by side. Ignorance is bliss, but not obliviousness or denial. They’re just plain ol’ things that some people can’t admit to. But even to deny a wrench being thrown constitutes that wrenches in fact, do exist, and the denier probably just got hit by one, which rendered the denier to be just as plain as everyone else. So much for those rivers in Africa. You might as well have said that you have a special wrench than to say you’ve never experienced a wrench at all. At least more people will believe that you know what you are talking about.

I’d like to say that I won’t be getting hit by any wrenches in the next several months, but that’s not likely to happen. There are never any free rides. We pay for what we get and we get what we pay for. I’d like to think that my next several months will breeze past me with no fouls called, no bumps in the road, no air turbulence and especially no wrenches hitting me in the head if at all possible. At least let me have my way when I call them little teeny tiny wrenches. We don’t have to worry about my denial, mainly because I know they exist. I will try not to become exasperated when my loved ones see those wrenches as huge Open-end adjustable Plumbers wrenches, if they do appear to be that way to them. Let me see them as being small.

So here’s my first wrench:

I got my “Call of My Life” last week. I was told that we would be proceeding right along now, and that I needed to have one more cardiac test, and that the case manager would be (both) faxing and writing up an order for this one last test to be done locally (a catheterization or something like that). Of course, in my mind what I see is a scene from the movie The “Exorcist” when Regan is in the hospital and the heart test is being run on her, the needle jabs into her heart and she freaks, ripping the catheter out and then the bleeding starts, blood squirting everywhere, Regan flailing on the gurney….. this whole scene broadcasts through my mind in an instant flash. Of course, I know that’s not the same test I will have, but my mind still goes there, because that’s the imagination I was born with. So be it. I talk myself down again.

So I was told that I would be getting the call to come in within a day or so…….that was 8 days ago, and today we checked from our end, going backwards. No one has been told anything, no one seems to know anything, even though the case manager said she was going to write it up as soon as we were off the phone a week ago, Tuesday. When we ask about it at the Cardiac unit, we are looked at with blank eyes. I could have been a vase of flowers and received a better reaction. Don’t get me wrong, no one was upset, not even me. Everything was just blank.

It’s OK really, because once that test is done, the future becomes inevitable. They say I can still back out of surgery if I want. What?

I won’t be doing that because where have I got to go? Downhill? But that doesn’t stop the fright from invading my senses. I can avoid thinking about everything until the phone rings again. I am not immobilized either; today, after I came home from the gym, after we had checked the status of this test that never materialized, I did call up to Washington to let the case manager know. She’ll probably immediately send another order, and call me back, too. So I am not putting my head in the sand, not at all. I just have the liberty of having my head turned the other direction until I hear more, because the case manager’s voicemail says that she will always return calls by the end if the following day. So I have one more day of not thinking about it. I have the liberty of enjoying this teeny tiny wrench for at least 24 hrs.

ummm Baba ghanouj and Samboucik

I’ll make a good time of it. I think I’ll embrace this little wrench and have sambousek complete with accoutrement for lunch tomorrow in celebration of my 24 hr reprieve from the future.