Kelly sent the CPET results late this afternoon, with Dr. J's note.  It's late, and I'll pick it apart later. I know what maybe 40% of the results mean.  I intend to address that in the coming week.

***

I came in to work today early, and Dr. E was there.  He said, "There she is.  You're still coughing."  Thanked him again for his help, and told him I am feeling much better.  Prednisone sucks, but it works.  Whatever cooties I had, and subsequent hyperreflexic immune response to said cootie, it's gone now.  Now I'm left with the usual.  He suggested I hit up Debbie, one of our respiratory therapists, to see if my nitric oxide is high...if my eosinophils (a type of white blood cell that reacts in an allergic response) are overreacting. The number was 22, which is normal.  He suggested (did not write for, because it was just a conversation) the next highest dose of Advair (which is max dose.)  It was an incomplete conversation. 

I gotta say....writing is so much easier without the awareness of an audience.  I did write tonight....quite a bit.  It shouldn't matter the whole maybe ten people who occasionally pay attention to my stream of consciousness.  Most are bouncing from pectus.com forums, and so it's people who Get it.  Or you're my best friend.  (Hi, Bex.)  It's very different than writing to a dead sculptor.  I miss him.

Working in a pulmonary clinic with pectus is not like being a hungry person who works in a restaurant.  At all.  I work with good people, both my staff and my docs.  I have 56 docs, and I have from "decent" to "fantastic" relationship with 55 of them, and if you exclude the docs that I don't see in person because I don't work their clinic day....that blue-shifts to being even better (for the remaining 32 of 33).  I like my people, and I'm wildly uncomfortable burdening any of them with my stuff.  Hell, it makes some of them uncomfortable, too.  I can't hide a cough.  When they say, "Michelle, do you need me to bronch you?"...and because they CAN, without even making a big deal out of it...and my docs are where they are because the majority of them are damned good at it...those offers are, while joking, not insincere.  When they hand-write me a script, it's a kindness.  It costs them nothing, and yet there are people who wait for months to pay for the courtesy of their time and knowledge. 

It's a problem I am lucky to have, and should be grateful for it.  Except, well, I'm an asshole and it makes me squirm because I also don't want 100 people to know my business.  My pectus, my breathing, and my fight to be able to be as active as normal people has been a sore spot for ten years.  And a short prednisone burst for an acute problem is a humbling favor....dealing with my yearlong cough with surgery coming feels completely different.  Maybe it isn't. 

I don't know.

***

There's a painting I did, that I don't have good images of, because I sold it.  Years ago.  There's a section of that painting that is pthalocyanine blue and green, with some manganese violet, and there's a spinal column I painted that goes far, far away....back to where pulsars might be.  Sometimes, I can't quite explain where my head's at....but I could paint it.  Sometime this weekend, I'll see if I can dig up some slides of that.  No sternums in that painting.  But there's a pelvis, and a spinal column, curling back into infinity.

I don't know what that means, not in words anyway.... but somehow it's what I'm supposed to do. 

I have an incentive spirometer at home.  I confess, I stole it.  Last March, when I finally asked for someone to write me for Levaquin to get rid of the worst of the last bad cough that lasted a few months....I nicked it out of the closet.  We have had the same eight incentive spirometers in our store room at the clinic since I started.  There is actual dust on the plastic covers.  (To me:  Dust on a pile of incentive spirometers is a snapshot of What Is Wrong With Pulmonary Clinic, which, yes, is in no small part my problem to fix.)  Now we have six of them.  (I had a good excuse to force one on a patient one day.)

I love incentive spirometers (IS).  When I worked the bedside, I was sort of a religious zealot about them.  It's a plastic thingy that forces you to take slow, deep breaths, which is a good idea.  I think they're cheapest, most under-utilized therapy we have for keeping people well.  Yes, we need inhalers and steroids and antibiotics and bronchoscopies and chest tubes and oscillators and everything else.  But.  It's kinda like my previous rant about soup.  Soup is good.

There's a different plastic thingy called a flutter valve, or an acapaella, or a "pickle."  It does something slightly different than the IS, because it adds a bit of resistance to your exhalation...expiratory pressure.  This opens up your lungs a bit, forces them to work slightly harder, opens up airway passages that don't feel like opening...and has this vibrating feeling thing to loosen up crap in your lungs, so you can get it out.

I ordered one on amazon a week ago, and it arrived today.  And I love it. 

It's the best damned thing ever. 

Even if you were to tell me that I'm completely fine right now, and when the prednisone is done (it isn't yet), I will be magically not coughing from anything....I still love this thing.

At first I felt like I was coughing up cat hair.  (And maybe I was.)  (It's not impossible that, per Dr. J, my PFTs "are still not what they should be, even given your defect" because there's this massive Bella-and-Beau colored hairball under my heart....admittedly it's not terribly likely.)  (It could be a alien growth, as well, but....the odds don't favor that, either.) 

But this goofy plastic thing makes my lungs feel better.  Seems worth doing.  When I go to Mayo, they will probably give me one or the other of these.  Everybody who's been through a surgery can benefit from them.  Maybe I'll ask the girls at the front desk to bling mine up for me. 

No, I haven't ordered my brace yet.  I've got to measure for it.  It depresses me to think about measuring for it; I'll get over it.  She explicitly told me to get that prior to surgery.  I'll do it this weekend.

I was reminded today when I came home and got the bills.  Roughly $500 worth, most of which related to the test, not the read (i.e. the MD bill).  I still haven't got the actual results from the CPET yet, either.  I stuck the bills in my bag to remind me to call tomorrow....it's been a month since my first request for the test.  They have it; they just forgot I asked for it.  I want to look at it, and I know I want to pick some other brains about it. 

Just happy about my dumb new toy.

My coworkers sent me home.  Okay, and one of the docs, too. 
 
I’m really glad they did, because I took 40mg of prednisone at 6:30 this morning.  It is now 1:10pm and I am ZOOM!   ZOOOM!!  ZOOOOOOOM!!!! 
 
Lucky you, I’m going to sit down to blog.  Because I go downstairs to obtain object A, then I notice object B is out of place, clean countertop S, put Q away, fold N, pick up cat fuzz, pour myself a glass of water, look to see if I have T, U, and V to cook D later this weekend, notice R is out of place and take it back upstairs….and then realize I didn’t get A.  Rinse. Repeat.
 
I think they sent me home because the cough sounds so bad, but ….there may have been other factors in the wary looks at me today.
 
I left my water downstairs.
 
Okay.  I am sick.  Again.  I came home from Phoenix and promptly came down with a cold.  A plain, vanilla, corona virus.  I am a nurse in a pulmonary clinic, and every year we have patients that call and say they have the flu.  Most of them do not.  They have a cold, and they forgot that colds are not fun, either.  If you drive a Prius, say so.  Don’t tell me that your Prius is actually Ford V8 Expedition Alaska Singularity-Creator.  I am not impressed.  (And you thought nurses were nice people.)  (silly.)

Granted, these are pulmonary and renal patients.  Some of them actually are having COPD exacerbations.  A cold on top of COPD may well feel like a Ford V8 Etc, etc.  A handful are having CHF exacerbations.  Some of them get dry because it's winter, or that corona virus causes a little damage and a little dehydration, and that little bit of AKI on top of CKD means their lungs are full of fluid, not flu. 
 
Further, chances are EXCELLENT that the average person with said cold-not-flu (and not one of the other possibilities) does not need antibiotics.  If it goes on awhile, maybe a Zpack is needed.  That’s it.  Just because you sneezed, you do not get a Zpack.  You get soup.  When you call my clinic and you genuinely have the flu, you sound like you’re driving around in a Singularity-Creator.  And guess what?  Possibly, I’m going to tell you that you get soup, too.  But I’ll be more sympathetic in my delivery of this news.  When you need the ER, don’t worry…I’ll tell you, and yes, I'm going to tell your doc you called. 
 
I did what I was supposed to do for a plain old cold.  I made soup.  Rest, fluids, added more vitamin C and ibuprofen because I am happy to pay for expensive urine for a few days so that I can honestly tell my mother, the not-a-nurse, that I’m doing what she tells me to do.  It faded to my usual cough.  I’ve had a cough for so long I can’t really tell what was lingering-viral-thing and usual-cough-that-hasn’t-been-fixed-for-a-year. 
 
And honestly, I’m so used to coughing all the time, I get sick of thinking about it and I don’t care anymore.  In my head, I’m  hoping that once I get the rebar placed, something akin to magic happens. 
 
Possibly the lungs will be free to expand…and if there is schmag buried in the warm, smushed up left lower lobe that never opens that the CT scan does not show.  Because it does NOT, in fact, show that…which does not quiet my irrational fear of this happening.
 
Possibly, whatever fluid is or isn’t building up because my right ventricle is twisted and smushed and fluid is backing up into my lungs….something I have NO rational reason to suspect is happening given my beautiful 110/70 vessels.  And the echo cannot show the RV enough to prove or disprove this, and yet this even-less-rational fear also won’t shut up.    
 
Irrational fears take energy.  Thinking about things over which you have no control takes energy.  The Buddha said these things are dumb, and you shouldn’t do them.  Occasionally, I take that advice.  If I were succeeding with this today, I would not be writing right now.  I blame prednisone.
 
The cold faded to my normal life of mild cough/typical chest tightness/wow-did-we-drop-down-in-elevation-by-50-feet-because-I-actually-noticed-I-breathe-better-honey-when-can-we-move-to-lower-altitude?...
 
Then we rented an RV and went to Roswell, New Mexico.  Because that is something people should do.

It’s January.  It got down to negative 22 degrees the first night.  We had a great time….drank a bottle of five year old Prisoner (mmmmmmmm), we three played a card game (Chase: 2, Mark: 1, Michelle: 0), cats started to shake off some of the terror of being inside a moving house, lot of stars the brief amount of time we forced us all (humans, not cats) out in said negative 22 to see constellaions….was a good time. 
 
Coughing more the next morning.   Blamed cats.  Because husband asked about it in that tone of his that says My Wife Needs To See A Doctor, Goddamit Why Don’t You Listen To Me On This.  Made posole, because that's what you eat New Year's in New Mexico.  Been making it for ten years, deeply happy comfort food posole.  Went to alien museum with family.  Forced teenager to stand in front of aliens while I took pictures, which made me very happy.  Photos of pained self-conscious teenager in front of styrofoam aliens are perfect.  (He does not actually hate me, although I realize he has grounds to do so.)  Ate green chile with every meal that wasn't my posole.  Noodled around in Santa Fe, looking at arty things, and  mineral-y things (well, they did.  Minerals are rocks, and rocks are boring.)  Debated alien existence over chile rellenos.  Had seven year old port that evening (mmmmmmmm).  Read books.  That night was only down to 20 degrees above zero.  Slept like shit regardless.  Coughing even more the next day.  Blamed faint smell of propane, in addition to cats, because husband asked with aforementioned tone again.
 
By Sunday, I was doing the driving and at dinner, I decided to pull the whole way home.  I waited until coming out of Trinidad to tell them so, because by then I was sure I could make it.  I felt bad.  Really bad.  Chills with cough, no fever.  So I got us home by 11:45 pm.  And the next day I felt post-death.  The cough was spasm-y, clear/white sputum, congested, chest super-tight, sinus pain, blah blah.  I called in to work at 5pm because I knew it would be bad.  And I was right on this.  But it was not flu.  Nobody else was sick. 
 
So what was it?  I don't care.  More damn coughing.

Wednesday I came to work because I felt a little human, and because there is still one task with renal referrals I routinely do that the other nurses don't know how to do yet.  (And I began teaching Kate how to do that thing this morning.). I did fine most of the day, but by the afternoon, the cough was worsening.  I felt better, but I sounded bad.  One of the docs made an aside about “Michelle’s pneumonia.”  Twice.  When I thought everyone had left, I had Denise, one of my nurses, listen.  I knew it wasn't pneumonia.  But I asked her to do it.  I asked her to percuss me, too, which is incredibly helpful.  (Was something I used to do a lot working nights at Porter...as often as was possible, and when clinically stable enough, my intubated patients always got a bath, a hair-washing and often percussed if it helped on my watch.)  (I was kind of a fuss-budget.)  (When I was hit by that car, I had blood in my hair for two days.  If someone has blood in their hair, get it out, for gods' sake.)  (I blame all parentheticals on the prednisone racing through my bloodstream.  So should you.)

I’d forgotten Dr. E was still in clinic.  He came in and told me I needed Tussionex.  “But I don’t want narcotics,” which sounded way more whiny-12-year-old-girl than I’d intended.  He offered "see me unofficially", and he wrote the prednisone, the cough medicine, and a Zpack.  He is a very kind, deeply wonderful person.  I know why his patients love him the way they do, and I understand it.  I forgive the comment that my pectus doesn't affect me.  That still isn't true, but he engenders trust for good reason.  I have always respected him.  I was very grateful and all funny-feeling and hate imposing.  (I am my own worst enemy when it comes to people helping me.)  He thought it odd I considered it imposing.  But being a nurse with a chronic cough who happens to work in a pulmonary clinic is not actually like being a person who is hungry and happens to work in a restaurant.  It just isn't.  And that's a whole other barrel of monkeys.  Anyway.  He wanted me to stay home today. 
 
I didn’t.  And I sounded worse today.  By a lot.  Even though I feel better.  (Prednisone!  For people who do not have access or interest in illegal stimulants!!)  Why did I fucking go to work?  Because of aforementioned enemy-self-person, and by noon I thought they might tie me up in a sack if I didn’t leave.  I wasn’t there because I want to be all a martyr and come to work.  Nor do I do this because I want to be indispensable.  Beneath this nurse is an ex-database administrator whose purpose in life was to write clean, flawless code complete with comment code so that nobody would page her at three in the morning to go fix shit.  And anyway, an ICU nurse goes home when report is done.  
 
I do this because I want to deny I’m sick with anything ever.  And there’s this whole thing with reality not cooperating with me at ALL and this whole thing about I have NO CLINICAL FUCKING REASON FOR HAVING A COUGH FOR A YEAR.  So this additional cough on top of it should be no different.  And yet.  Here it is.  And.  Maybe if I act like everything's fine it will be.  Because that works well. 

You get tired, you know.  You just get tired.
 
So.  I came home today.  And I’m not going tomorrow.  Even though the prednisone is making me think about all this work I could be doing and buzz buzz buzz having the energy to do it….
 
Here I am.  Annoyed.  Hating my nebulous non-excuse of an ICD-10 code.  Talking to myself.
 
I’m gonna go make soup.