So here's the blue-haired selfie.  (Perhaps I should have said Katie didn't do my whole head....sorry if that's a disappointment.)  I can't find the photos Katie sent me the day she did it.  She did cobalt blue underneath, and streaks.  This is about two weeks later.

On July 15, I got not one, but two calls from Kelly, Dr. J’s intake coordinator.  Which was exactly the type of fairly urgent response I was hoping for.  In the packet I’d mailed, I said I had questions about the CT.  I took a screenshot of the CT slice that shows the bone shard (uploaded on this page), printed it out on paper, and circled it. I wrote something on that paper like, “This seems bad.  Can we discuss?”
 
Kelly, as always, was very kind to me and set up a phone call for that following Wednesday.
 
So I was angry that I got an infection.  But infections happen with surgeries.  I’m a medical person.  I get it.  It was my stupid luck to be The Infection This Year.  Their risk department undoubtedly began investigating my case as soon as Mayo heard about the pleural effusion in early June. 
 
I have been on the other side when patients have problems.  I’ve call Risk on their behalf, to investigate and see if we can make it right.  Those situations are rare, and in my nursing career, I have seen very, very few situations that were just flat-out negligent.  Health care people didn’t go into health care because we’re evil.  We got into this to help people, not for money or glory.
 
No one likes it when your patient does badly.  No one likes to see another human being suffer.  ‘Bad’ health care providers, truly sociopathic people, are extremely few and far between.  (I only say they exist because of that one nurse I worked with last year.)  (Okay, that was more like narcissistic personality disorder instead of sociopathy, but the effect felt very similar.)  (Anyway…)
 
All but those three or four assholes per capita, when our patients feel bad, we truly feel like shit.  And we truly want to make it better for them.  Even people who are jerks, because they probably wouldn’t be jerks if they weren’t in pain.  Or dying.  Or have some fucked up disease that they caught from a mosquito, or because they lost some genetic lottery.
 
So I know nobody at Mayo did this to me on purpose.  And none of them wanted it to happen.  My complications directly screw up Dr. J’s research results (I am in her current study).  But I don’t think that’s the main point to her.  Because I don’t think she’s that person.  I don’t think her OR circulating nurse is that person.  Or her scrub tech.  Or her fellows.  Or Marianne, her clinic nurse.  Or Kelly, her intake coordinator.  Or Mike, her PA.  I pretty much think they feel how I feel when something really shitty happens to one of my patients.
 
I am angry at the infection, but I don’t have anyone I can shoot that anger at.  Because people are humans, and they make mistakes.  And we have to forgive that.  And when I remember that, that anger dissipates.  Which is good for me, too.
 
The bone poking my heart makes me angry, too.  Not because it happened.  I expected broken ribs.  I mean, maybe you didn’t watch the video, but what she did to me was violent.  That video is hard to watch.  She wrenched on my rib cage because it needed to be fixed.  I’m 44 and I am not bendy anymore.  I pretty much can’t touch my toes.  My cartilage is creaky and old.  If it weren’t for modern medicine and antibiotics, I would be considered an OLD WOMAN by now.  A saber-toothed tiger should have eaten me long before now.  I’m old.
 
But after the surgery, Dr. J came to visit me in my hospital room.  She had the happiest look on her face, dressed in greens and the first thing she said was, “We didn’t break any ribs!”  She believed that.  The chest Xray didn’t show it.  She was believing that she was a badass because she got complete correction on a 44 year old woman with a Haller of 6.7 aaaaand a twisted cartilage.  I could see it in her face.  She was really happy about how my surgery went.
 
So I’m not mad that the ribs fractured.  But we didn’t KNOW about it BEFORE I left Arizona.  Because it’s not standard to get a CT scan post, which would have showed it.  Sometimes I’m mad about that, and sometimes I understand, and forgive.  There isn’t a clinical reason to do a CT scan for most patients.
 
So.
 
That Wednesday’s conversation with her was brief.  Only because I was upset because she gave me the news I knew was coming, and didn’t want to hear.  And I don’t like to cry in front of surgeons.  So I told her I needed to talk about it with Mark.  I asked her:  If I had infinite time off, no responsibilities and if my husband had infinite time off and no responsibilities, when would you want me back?  “Within the month.”
 
So.  There is indeed a kraken in the pool. 
 
And this is, actually, bad.  I’m not wrong.  I, meaning the crazy hysterical voice in my head.
 
That was when I started to have to get off the phone.
 
So after the sobbing and runny nose and husband-texting stuff, decided, on Sam’s suggestion, that I would call the Mayo patient representative.  Some people do that because they want to sue, or blame somebody.  I want neither of those things.
 
I DON’T WANT ANOTHER BLOODY INFECTION. 
 
And I want the surgery DONE RIGHT THIS TIME. 
 
After all, we are talking about an open procedure here…a modified Ravitch.  This is precisely the surgery I did not want.  This is precisely the only surgery they do at UCH, and I would certainly have the option to stay instead of flying to Phoenix.  And believe me, it was a hard decision to make.  Mark and I did talk about staying here, in Colorado, and getting Jim to help us get an appointment with his friend and favorite cardiothoracic surgeon, who does the Ravitch.  The only good part about everything I went through with the second hospitalization was feeling like I had my very own dragons to protect me, because these are my people.  I am home, and they know me.  I am one of them, and I will be treated as such.  I know every patient wants this, and every patient deserves it.  But the reality is that not every patient is treated like my brother or sister or mom or son.
 
We’re going back because only Dr. J is going to be highly motivated to keep those bars in….and because they probably do want to make it right.
 
So while I am sure the team will take more care this time, I wanted to use the additional pressure of some of the hospital bean-counters and lawyers aware that mistakes were made last time.  The following day, I spent twenty minutes on the phone with a patient rep, telling my story.  I’ve probably been on Mayo’s Risk radar, as I said, but now I’ve had closer contact. 
 
And I want to deal with this directly with Dr. J.  I spoke with Kelly and told her that there are some non-negotiables: 
 
1) I get a CT scan post, and will review it with Dr. J.  There will be no getting on the plane without that.  I know that CT will have a lot of artifact, now that she’s putting new metal in there.  I don’t give a shit; we’re doing it.
 
2)  I get to speak to everybody that will be in the operating room about infection control.  With everybody’s full attention.  I can’t imagine it will be easy information for an OR team to hear this from a patient.  But I will bring pictures of my pleural effusion and explain to them that someone at Mayo caused it in April.  So please wash your hands again.  And nice to meet you, Scrub Tech, you’re gonna wash me double or triple the usual routine.  Thank you for taking care of me today.
 
3)  I get Dr. J’s A team.  It’s AUGUST at a TEACHING HOSPITAL.  July is when new graduates start…new fellows, new residents.  July is a shit show every year.  People die in July.  There’s studies about it; it’s a real thing.  August is only thirty days better.  I told Kelly (and I will tell the team) that I don’t want anybody who hasn’t been doing that job for at least two years to touch me.  New people can watch.  No touching.
 
If I wasn’t medical, how would I be advocated for? How would I know what to ask for?
 
There was some back and forth done through a few calls with Kelly, but Dr. J is fine with that plan.  I have another call scheduled with her Wednesday, so I can get the nitty gritty details I want about what she’s cutting where, and what she’s going to use to glue me together.  I don’t want mesh, but I don’t think she uses it.  Some newfangled thing that I know nothing about and can find out more about as I prepare for this.
 
The date for surgery is pencilled in on August 26. 
 
I’ll be booking flights this weekend.  Because.  Here we go again.

Oh yes.  The part of six weeks of intermittent nausea.  That part.  This part is probably not as funny as that part about the bone shard poking my ventricle.
 
Because nausea is horrible, and for most people, worse than pain.  There are people out there with chronic pain who will disagree with me, and that’s okay.  That’s their experience.  I don’t know that it’s even valid to compare the two.  My experience is from being a nurse, working with patients, and now being one.  Given a choice, I’ll take pain over nausea.
 
People have been asking me about the pain a lot.  Because, well, cracked ribs, restructured chest cavity, rebar tied to my ribs, etc.  I think the thing that bothered me about the pain was the exhaustion that came with it…the pain itself, yes, sucked.  But it’s like…the pain syndrome of being so very tired, being unable to do the damned laundry, having to sleep so much more.  There’d be sharp stabbing feeling of something telling me to never move that way ever again… and then a fear of how I move.  The fear and the exhaustion part bothered me more. 
 
Nausea has the worst parts of pain, but without pain to blame it on.  Plus, the bonus of occasionally throwing up.  Which is then painful.  It’s the lethargy, that feeling that I’m a thirtysomething (i.e. “past my prime”) year old wealthy Victorian lady who just lingers on a setee, back of my hand to my forehead, with nothing to do.  Maybe.  You can’t do *anything* when you’re nauseated.  Pain can occasionally sharpen your thinking…nausea dulls it.
 
You don’t ever feel WELL when you’re on high octane antibiotics.  And don’t get me wrong, Ancef was relatively kind to me.  I did not want Vancomycin.  No.  Ancef I got used to.  So I gave it three times a day.  I had to get up at 6am for the first dose, and then 2pm, then 10pm.  I was getting less sleep than I had, and my body didn’t like that much.  The hour after I gave the injection was fairly useless.  I was taking some form of probiotic every day.  In a shake, or a cup of yogurt.  It's a habit now, I'm still doing.  (Of course, I'm still on antibiotics, just lower octane now.)
 
I went back to work sometime in that six weeks, working around that 2pm injection.  I very often ended up injecting myself while driving to and from work, when I did short days.

Prior to my surgery and during this entire time, my friend and colleague, Katy, was going through significant medical stuff, too.  Like, I shouldn't whine because holy crap, I'm so sorry that you're getting this in your world.  She had a PICC at the same time.  When we were both off, we were well enough to go hang out, and maybe walk some.  It was weird, being two nurse old ladies with PICC lines, taking our IV antibiotics, and commiserating.
 
Katy agreed with me that the PICC you feel all the time, where it goes into the skin.  As a nurse, I wasn't aware of that.  I thought people with PICCs would just get used to them and forget about it.  Yeah, that never happens.  I developed a tape allergy, which is, you know, fun.  I had blisters.  It's faded out now.

The photo below is not me.  It is a random photo from the internet.  I had a single lumen.

One of the weirdest things about having a PICC is how “public” it is.  Because I'm giving the injection myself, I had to have a long extension on the catheter, so both of my hands could get to it.  And unlike most people who have PICCs, I didn't wrap it up around my upper arm.  It drove me nuts.  So mine sort of dangled, and I wrapped the tip around the mesh I wore around my wrist.  Felt less bothersome, and I'm now already used to the fitbit being on my left wrist.  So it was visible.  It's summer.

Several total strangers felt the need to tell me to keep fighting, and that I look great.  Um.  Kay.  Thanks?  It felt invasive to have strangers ask what's wrong with me.  But I recognize that these people were very often cancer survivors themselves, and they just don’t know that PICCs (Peripherally Inserted Central Catheters) are not used for chemo.  Ports are.  They saw that it’s an IV, and assumed.  I know that from their hearts they wanted to show me kindness and compassion.  People with cancer have it far harder than anything I’ve done this year, and I don’t get to be a member of that club that deserves to be told I look good.  I am in the Whiny Infected Person club.  It’s far less admirable of a club.  Nobody runs for that cause.
 
And I just didn’t wanna talk about it.  Because what was there to talk about?  Nausea is tedious.  I don’t remember large chunks of that time, not because I was taking a lot of meds or sleeping (trust me; I was doing neither).  It’s just that nausea can feel a little like depression in that time just passes with you not noticing much of anything happening.  I wasn’t depressed.  I just wanted it over with.  I was really glad to go back to work, even if it was wiping me out. 
 
Dr. Kristine is pretty awesome.  At one point, she prescribed rifampin for me.  Yeah, medical people, rifampin.  Apparently, rifampin kills cooties that form slime layers.  (“biofilm”)  (whatever.)  Rifampin also turns all your body fluids orange, with a faint odor.  So I was really looking forward to that.  I look so good in orange, and I wear white socks very often and my feet sweat.  Fan.  Tastic.
 
In good faith, I took the first two doses as prescribed, and woke up with my stomach on fire.  And then it was 3 in the morning, and there was laying on the bathroom floor with my face pressed to porcelain, thanking the porcelain for being cold and neutral and nonjudgmental.  If something like that’s going to happen to me, I should have had some significant fun hours prior to that. 
 
So.  I called Jocelyn, my neighbor nurse who works with Dr. Kristine, and asked her to please quote me in the triage message to Dr. Kristine and state, “Patient reports that rifampin is from hell.”  From hell, Jos, make sure you tell her it’s From.  Hell.  Quote me.  Can you ask her if there’s something else I can take instead?
 
Jos and Jackie, the two nurses over in ID that I know best have been really awesome throughout this thing.
 
Rifampin was stopped.  We went with the Ancef for a few weeks, until I noticed the PICC site was bothering me more.  The site was getting red, and Jos noticed it, too, the last Monday she changed the dressing.  By Friday it was worse, and Dr. Kristine gave me the happy news that I could have the PICC out.  Oh happy day!!  I was singing in clinic.  And there was some hopping, too. "I GET MY PICC OUT!  I GET MY PICC OUT!" 
 
Jos pulled it (and fibrin sheath with it), and the site did not look good.  (Boy was I glad it was out when I saw that little fibrin clot.)  I kept topical antibiotic on it for a few days, and it’s better now.  I still have faint tape mark scars.
 
My chest Xrays continued to get better.  The day the PICC was pulled, the radiologist said NO pleural effusions at ALL.  woo!  Woo!  I could see my margins of my lungs to my diaphragm, totally clear.  WOO!  (I promise I’ll get imaging to upload.)
 
Now I’m on oral antibiotics.  Moxifloxacin, daily.  (I call it “moxy-floxy” because it’s fun to say.)  (Jackie got my prior auth for that, saving me $400.)  Dr. Kristine wants me on that for three months, until she gives me the M&M that is doxycycline.  (Doxy does nothing for me.)  I take moxy-floxy at night, because I discovered the hard way not to take it on an empty stomach in the morning.  I don’t have any nausea now, and my energy level overall was getting much better.
 
Almost immediately after the Ancef was gone, I was able to do significantly more 10,000 step days.  (I got a fitbit a few weeks after the surgery.)  I was doing great.  Felt stronger.  My weight was stable, and very slowly and gently drifting down.  This is how it should be.  As of today, I’d like to drop three more pounds.  Just three.  Then my fitness isn’t about weight or fit of clothes…it’s about getting a stronger heart.  Being able to get up in the mountains more.  The important stuff.   
 
So I was getting stronger. 

And I needed to deal with that whole bone in my ventricle issue, which, you know, I’d been avoiding while I was Whiny Infected Person.  It's time to stop with the delay stuff.
 
Mark had mentioned, several times over the weeks of the Ancef about what we’re gonna do about that whole bone shard thing.  I wasn’t ready to deal with it, and he wasn’t pushing.  He wasn’t the only one nudging, either.  Jim, my pulmonologist, knew, too.  So he was occasionally nudging me to send the imaging to the surgeon.  I don't even remember who I told about it....not a lot of people.  Part of me meant to, but ....just didn't get around to mentioning.
 
The week they pulled the PICC is when I put together a fat packet of my UCH history and physicals, discharge summaries, and all the imaging and sent it.  I had several CXRs and most crucially, the two CT scans.  The first from May 29, with my lungs like little floating deflated balloons in this container full of cootie-laced water, and the second from June 2, after three liters of that fluid was gone. 
 
And that’s where I’m leaving off today.  When I come back, we’ll be at July 15, when I reconnected with Mayo.

So, yes, the CT scan. 
 
(I am writing this at home, so I am unable to get the images for upload itself.  But I will, so you guys can see.) 
 
Because this is my blog, I’m going to talk about radiologists first. I’ve talked to many radiologists over my years as a nurse, but I don’t think I’ve actually SEEN one.  Probably I have in the hospital cafeteria, or the parking lot.  But I don’t know any faces.  This has led me to imagine some flight of fancy ideas about them.  I imagine that during medical school, once a person chooses to specialize in radiology, they are attenuated to spend more and more time in the dark, and less and less time in daylight.  Kinda like how fish in deep caves become albino over generations.  (I understand the whole natural selection over generations thing; these are my ideas and I can have them.)  I kind of wonder if daylight causes harm to radiologists.  Maybe their skin burns in it.  Or sparkles, like girly vampires.  And maybe that’s why I don’t see them.
 
I also think that while they’re being attenuated to increasing darkness, they are also attenuated to finer writing with perfect neutrality.  Because they are finding what they know is likely cancer, but they can’t say, “You’re gonna die”.  Even if they know patient’s gonna die.  They deliver that finding of “a mass”, usually the first finding of cancer and other bad things before workup is done.  And the patient will be reading that report.  It’s unlike other physician notes that patients have to put more work into obtaining.  People want their CXR reports, they want the ultrasound reports, they want the PET scans.  Radiologists deliver news very carefully.
 
That neutrality is also perfect poker face.  The radiologist is the guy who, on assessment of patient’s CXR ordered for abdominal cramping in the ER, finds the unusual objects in subject’s rectum.  And further, tries to identify said objects….and write the report that writes it in a nonjudgmental, professional way.  Come on, that’s funny.  Even the patient will find it funny in a few months, maybe years.  The ER doc’s note might say, “patient reports accidentally sitting upon light bulb,” but that note has a TONE.  ER docs do not have good poker face.  They may be very professional while they are with the patient, but you know damn well what they really think of the situation. 
 
Radiologists are medicine’s straight men (and women).  I’m sure they’re gathered around the screen in their dark little room deep in the hospital’s bowels, all busting a gut together.  But you would never know how hilarious they find that penis-shaped object that traveled up to your sigmoid colon, because the reports never have a tone.
 
So you know that insurance commercial where the golf commentators are whispering while the kraken emerges from the pool and they continue to whisper their commentary?
 
That’s what I imagine radiologists are like.  Only albino, and with really blue eyes.
 
I am probably wrong.  But this is my mind, and I have my own fun.
 
So, with that in mind, I finally got around to reading my CT scan interpretation 45 minutes before they let me go home.  It said:
 
“DATE OF EXAM: 06/02/2016, 1846
IMPRESSION:

1. Extensive postoperative changes related to pectus excavatum repair as noted in detail above. Of particular note is the fractured anterior left sixth rib which is displaced and rotated posteriorly indenting the left ventricle.

2. Fluid in the left epicardial space with associated enlarged pericardial lymph nodes secondary to postoperative changes. This may represent reactive lymph nodes with evolving postoperative hematoma or infected phlegmon.

3. Small bilateral pleural effusions and mild compressive atelectasis likely related to surgery.

4. Small hiatal hernia and distal esophageal wall thickening suggest gastroesophageal reflux.

If you are a health care provider and have any questions regarding this or any other Thoracic Radiology report please call 720-848-7129. The Thoracic Radiology reading area location is B.325 AIP2 basement. We are staffed 7:00 AM-5:00 PM Monday through Friday.”
 
“Of particular note”?!?!  “OF PARTICULAR NOTE?!?!”  It’s his SECOND SENTENCE.  The radiologist is NOTING something.  PARTICULARLY.  He’s saying there’s a KRAKEN IN THE POOL!  I’ve got a BONE FRAGMENT poking into my LEFT VENTRICLE!  And EPICARDIAL FLUID?!?  Wait, BONE FRAGMENT?  Did he say it was displaced and rotated posteriorly indenting my L E F T   V E N T R I C L E ?!?!?
 
That sounds kinda bad.
 
…And that’s how I dealt with this news, initially.  First, blinding panic and then some self-preserving neurotransmitters immediately shut that down.  And I started thinking very calmly about who I might need to make amends with.  Who I needed to be sure knew that I love them.  That Chase and the cats have Mark.  And that although I couldn’t do much about flying to India for travel that day, I could certainly dye my hair blue. 
 
I’m sorry if you didn’t follow that last part.  Those are two things I’ve always wanted to do:  travel through India, blue hair.  I don’t have a formal bucket list, because until I read that CT scan, I didn’t feel the need to organize activities I needed to do before I died.  Those were two things that came to me.
 
And.  Dude.  I have a hiatal hernia?  What’s that about?  I should google to see if that will go away now, because I’m not actually going to ask any of my doctors about that.  Do I know any GI nurses?  Hm.  That charge nurse on three was really nice, what was her name?
 
The day I found my useless first husband cheating on me, I was that calm, too.  “I am so divorcing you” was my exact thought, delivered in radiologist monotone.  I calmly asked the whore he was fucking to excuse me a moment because I needed my car keys back, and I calmly picked up my bank card from the bartender.  Hysteria and the throwing and breaking of objects came much later.  Old story.
 
Got a bone poking into my heart.  Sounds kinda bad.
 
It isn’t clear to me how Mark processed this information.  He says he knew I needed surgery to fix it right away, but it wasn’t until this last week that he’s said he wants to go get it fixed NOW.  He was taking his cues from me, and he doesn’t see the blinding hurricane flash in my head because it happened so fast.  And I was sleep-deprived and nauseated and had a stupid PICC line in my left arm, and so calm was what it was.
 
I’m not the kind of person that denies a thing is happening.  But rarely, and on big things (i.e. divorce, this….and honestly, I can’t think of too many examples), I delay. 
 
So I decided to sit on this information.
 
And get my hair dyed blue.
 
And think about death.
 
I did, too, and I’ve got years of goth girl training so I do that well. 
 
Sometimes.  Because a large part of my brain was also aware that a) I’ve clearly been living with this since April 21 and I’m not dead yet.  And b) this must happen to other of Dr. J’s patients.  This MUST have happened when she pushed on my ribs to fix the rib flare, so she has to have patients for whom this occurs.  It must be typical.  It has to be that this is common.  Will the bone set like that?  Is there any mechanism that would make it less pointy?  No, that doesn’t make any sense, less pointy.  Ridiculous.  I can’t possibly be the first one.  Why didn’t they catch it on the CXR?
 
And sometimes I thought about it more darkly.  So, if I get into a car accident, and the airbag goes off, and that bone shard rips open my ventricular wall….will it hurt?  There are no sensory nerves on the heart, which is why people get referred left arm pain.  Wow.  I should watch for left arm pain.  Is hypovolemic shock painful?  And I was flipping through my mental rolodex of thousands of patients over the years, looking for faces who had hypovolemic shock.  So my kidneys will shut down.  Probably long after I care, though, so probably not relevant.  At what point will I lose consciousness?  Should I be running at all?  Since this didn’t just happen yesterday, presumably running won’t make a difference…?  Maybe I have epicardial fluid because I’m scratching my heart while I run?  Is that a stupid idea?  You’d think this might hurt, but it doesn’t.  I mean.  People have pain with fractured ribs.  Why am I not more of a mess? 
 
On and on.  For a month I’ve been doing that, on and off.  I haven’t been brooding.  I had plenty of things to think about.  I went back to work a two weeks after discharge, so my head’s been full of work stuff, too.  And getting back to living more normally.  The dilemma of how to find a good bra, now that my chest measurement is four inches larger.  (That’s been harder than you think.)  And oh, I loved that bra and I can’t ever wear it again.  And laundry.  And uremic symptoms my cat is having.  Stuff everybody thinks about.  Albino radiologists.
 
But no, I didn’t deal with it beyond talking about it with Mark, and telling Jim, my pulmonologist.  His response was, “Does the surgeon know?”  And no, she did not.  It would be my job to tell her, send her the scan.
 
And instead of doing that right away, I decided to put my fingers in my ears, and yell, “LA! LA! LA! I CAN’T HEAR YOU!”
 
Because I am a grown up.
 
I dealt with the PICC and the infection first.  Because I didn’t get a choice in dealing with that.  Which is the next part of the story.

It's a little weird to me that I have an audience.  People are reading this, and I have the best friends and family anybody could hope for.  And I am really, really grateful.

My parents know now.  They don't read this blog, anyway, but they know I have to go back.

I left off on my way to the hospital for the third admission in three months...

I was direct admitted to the Pulmonary Unit (8th floor), under Jim's care.  I don’t know how he got me a bed that fast, but it might be best I not know who he made cry to make that happen.  (I am grateful for this.)  (I feel a little guilty about that, but not as much as maybe I should.)  I packed my shit, and told Mark to pack his computer and magazines, and back we went.  Jim hugged me when I arrived. They were still cleaning the room, so I hung out outside.  We had my initial consult in the hallway, with him, and with Infectious Disease.  Dr. Hermione was the fellow and I liked her immediately; Dr. Kristine was my attending.  She's pretty great, too.

I had Staph capitis.  And you do, too.  It's not a problem for you because it lives on your skin, quite peacefully.  Inside the body, it becomes this raging thing that happens to leave slime trails on internal hardware.  Not unlike EXACTLY the internal metal bars I'd just had put into my chest in April.  (There's a more professional term than 'slime trail', but I'm making a point here.)  (Ask Dr. Wikipedia if you want some real medical advice.)  (That was sarcasm; you knew that, right?)

Jim wanted me tapped a third time, to get all the fluid and the bacteria swimming in the fluid out.  Dr. Kristine wanted that, too. I stayed the night, after they had taken blood cultures.  I was not excited about getting tapped:  more pain.  Initially, I could tell Jim was puzzled because he’s done hundreds of taps, and people just don’t have pain after the lidocaine kicks in.  But he was right about the necessity of it, and the fluid had to come out.  He said he’d see if Interventional Radiology would do it Thursday evening or early early Friday morning…and if it wasn’t done by the time he got to the unit, he’d get it done.

My night shift nurse was Jenny, and she was outstanding.  (I nominated her for a Daisy award.)  I wasn't sleeping well, but she everything she did or did not do for me was somehow magically the right thing to do.  She was compassionate, and kind, and I felt weirdly protected.  It's not like I was consciously afraid of anything in the hospital.  If anything, the second admission went better because Jim was running things.  I knew he was taking care of me.  And Mark was home and with me, and that felt normal and good.  Chase was home.  (He did come see me in the hospital because of some car-switching issues….advantages to having a 16 year old with a license…)  Anyway.

Ultimately, though I was a terrified mammal in pain who was being threatened by more needles. 

But Jenny B on nights was a balm I needed.  She was fantastic.  I was having to take more oxycodone than I did at home (maybe three tabs of 5mg a day)….those beds are fucking horrible.  UCH spent thousands of dollars on constantly shifting air beds.  This is great if you’re 90 years old and you might get a pressure ulcer.  But if you’re 44, and you just had chest wall reconstruction, YOU DO NOT WANT YOUR RIBS TO BE MOVING INDIVIDUALLY.  This is BAD. 
 
Friday, I still got up around 5.30 a.m. because I wanted to be clean and my teeth brushed before the onslaught of day shift arrived.  I know how hospitals work.  Phlebotomists start early, and who goes back to sleep after they’ve just been jabbed with a needle?  Nobody, that’s who.

One of Jim's fellows tapped me that morning.  I had Mark to hold my hand, which was so much better.  With the third tap, the pleuritic pain really hit.  I felt every bit of it.  The guys (i.e. Jim, the fellow -- sorry, forgot his name cos he isn't one of my fellows, and the resident whose first name I forget, but he was really a great guy) did not understand why it was so painful.  Got no idea.  It just was.  Jim looked fairly horrified through it, and wanted to give me Fentanyl.  Or ice cream (cos I'd asked for that at one point.)  The fluid had to come out though.  I called it when I couldn’t take it anymore, with a simple, “We’re done.”  And they stopped.  Another 500cc? or so? 

All told, they pulled almost three liters of fluid out of my chest cavity that week.  That's more than six and a half pounds of fluid.  Which meant that since the date of surgery (4/21), I'd lost 12 pounds in six weeks.  No wonder my liver function tests were screwed up.  (An obligatory liver ultrasound done that day offered no alternate explanation....i.e. my liver was fine.)

Despite how unpleasant it was, I do think it was harder on Mark than it was on me.  He stood there and had to watch while I dug my nails into him. 
 
When the guys were done with me, there was still a little fluid left.  I hoped to just absorb it like normal people do that have small pleural effusions.  Jim planned follow up CXRs. 

Friday midday.  My coworkers came to see me.  It made me so happy.  I don’t know why, but it felt like a car full of clowns came in and they made me laugh.  I felt loved.  My boss came to see me, with the floor’s assistant manager, who I knew a little and chatted up at the Nightingale dinner.  Diana, my favorite kidney doc and mentor and friend and …yeah.  Diana visited.  (Everybody who poked their head in when she was there, she had to say, “It’s okay, I’m not here for a consult.”)  Jim was there, often.  Not necessarily to give me any news, just to, I don’t know.  See how I was, and visibly worry.  Which made me feel safer.
Mark was sleeping almost as badly as I was, and he stayed until I insisted he go home and sleep.

At some point, Jim talked to Marianne, Dr. J's nurse (I don't think he could get through to the surgeon directly).  I’m not the first pectus patient to have an empyema (a pleural fluid collection full of cooties)….usually “empyema” implies chronic pocket of munge, but the technical definition fits what I had.  Apparently the course of care is six weeks of IV antibiotics, and then a full three YEARS of oral antibiotics, until the bars come out.  (Keep in mind....I have metal hardware in my left shoulder, too.)

This is what ID wanted to do, assuming my blood cultures were clear.  They wanted to be sure I wasn't septic.  I had zero symptoms of sepsis, but this is what they do.

Jim tried to get me bounced out of the hospital, but ID wanted to keep me until 48 hours after the blood cultures had been drawn.  Hermione obtained the most comprehensive history and physical of any physician I’ve ever observed.  And I liked her humor.  (“I want you to stay in the hospital for no less than 48 hours.”  <insert my resting bitch face here>  “You liked me better yesterday, didn’t you.”  Yes.  “I am actually sorry about that, but I still want you to stay.”  Okay, fine.) 
 
The antibiotic sensitivities came back, and they eventually caved a little bit to the 48 hour rule....and put the PICC late Saturday (everything but my liver function tests were dead normal).  They started me on IV Ancef, three times daily.

I was still having some significant pleuritic pain.  Saturday was my worst day…because of the new and exciting pain on top of the achy pain I’d gotten used to, the new nausea from the shiny new antibiotic bag, and the sleep deprivation and stress.  I moved my carcass to the couch (see above re: pressure-reducing torture device) and lingered there.  Because patients do not sleep on day shift. 
 
Bex faced her hospital fear and came to see me for a long time.  I’m not sure how long.  It was absolutely my worst day.  Mark was there, reading, and occasionally chatting with her.  She rubbed my forehead for like an hour.  Or more.  I don’t know.  I was so nauseated (Ancef, increase in narcs), and in so much pain.  Not kidding.  She rubbed my head and my shoulder while I laid on the couch, mentally keening through waves of nausea and fear.  (Why fear?  I don't know.  Cos I'm a mammal and there's needles and there's bacteria growing in between my fucking lungs and chest wall and it leaves slime on metal.)

Love Bex.  Told her I’d return the favor someday.  Intend to.

My husband is the most patient man in the world.  This has put him through something awful, too.
 
It got a little bit better, eventually.  The resident came in to see me often, too.  I think I was interesting, as a case.  Or, equally possible, Jim instructed him to watch me.  (Which, okay, made me feel better.)  He talked to me about the new weird pain sensations (that were scary and inexplicable at first), and got my walking papers (discharge summary).

And this is when we got to see the radiologist report of  CT scan. 

And I'm going to pause here...because.  This isn't all that fun of a story to tell. 

But I will come back to finish it.

I haven't written in a long time.  Because it got a lot worse.  And then some important things got better, and I went back to work and I didn't want to deal with the fact that I've known for a month that I have to go back for a surgical revision.  My parents don't know this yet, so don't nobody tell them.  Give me a few days to manage that.

So this is what happened, after we left off somewhere around POD (post op day, if you have not been reading) 36 or 38 or 40.

I had a few good days of feeling an echo of normal after the gabapentin cleared out.  Mark went to San Francisco for Memorial Day weekend to see a friend.  My breathing got worse.  I could only do one flight of stairs before I had to sit for a few minutes.  I couldn't understand it.  I thought I had pneumonia, thinking I'd been too inactive while under the influence of gabapentin.  That was the only thing that made sense.  No way I had a pulmonary embolism, I was walking still.  But I didn't feel good yet.  Still.  I went to my PCP, and she did a chest Xray.  Don't hate on my PCP, because I like her a lot...but she didn't take from the CXR that I had a pleural effusion (and I didn't see the report).  That's not weird in primary care, just unfortunate.  She prescribed a Zpack on a Thursday, May 26 and told me to follow up the next week.  I started the Zpack.

Sunday night, May 31, even I had to admit that something was really freaking wrong.  I was laying in bed at 11pm by myself at a 45 degree angle because I just couldn't breathe.  The Zpack had done nothing.  Something was really wrong.  Mark wasn't flying back until Monday.  I took myself to the freestanding ER a mile away (which happens to be a UCH freestanding ER), and told them, "Maybe I just need some levaquin."  I figured I might as well go, because it's not like I was going to sleep, and Mark wasn't home anyway, so I wasn't needing to drag him to the ER for some Levaquin.

Yes, I didn't really believe I needed Levaquin.  I was just telling the cats that.  I was still figuring that if I took care of it while Mark was in San Francisco, at least I wasn't dragging him with me.  ERs suck.  Not on purpose, but nobody likes being in them.

I'm a difficult patient.  No, I really, really don't think I need an IV.  Please, do you HAVE to?  No, I don't want any meds.  A D-dimer?  Well, okay if you have to.  D-dimer's "really high"?  Naw, couldn't possibly be a PE.  That's ridiculous.  I walk.  See?  I have a Fitbit now, I walk.  I can show you.  CT scan?  *sigh* Oh, all right, if you really have to.  But it's not a PE.  I'm not panicking.  See?  I'm annoyed, look at annoyed face.  This is not PE face.

Getting that CT was miserable.  I couldn't lay down well for it, couldn't hold my breath, and he had to give me contrast twice.  I am a pain in the ass patient.

We waited for the results.  I watched cooking shows.  I let Mark doze off in his hotel, promising to text with news.  It was around 1 in the morning at that point.  Finally, the ER doc tells me, "You have a HUGE pleural effusion."  Really?  "Yeah.  I think you need to be admitted."  That big huh?  "Yes."  Well.  Shit.  sigh.  All right.  Don't call an ambulance, that would be ridiculous.  I have to make sure the cats have food first.  "The cats?  You do realize that most people would be insisting on being admitted to the ICU right now."  DON'T. YOU. DARE. put me in an ICU bed.  I don't need an ICU bed.  You *might* be able to persuade me to go to tele, but no way in hell ICU....all they need to do is tap it.  I just need a tap. And yes, I'm going to feed the cats.  You get me a bed, I promise I'll go.  But there's no reason for the cats to go hungry and I drove myself here....I can drive myself there.

He was a nice guy.  He said, "It's actually nice because there is something ACTUALLY WRONG with you.  And we can fix it."  So you're sayin now is the time to tell you I'm allergic to everything for pain but Dilaudid, right?  "It's so refreshing that there's really something wrong with you."  Glad I could help. 

I asked that he get me a bed at the U, my employer.  (I'm texting Mark this, and then I told him to get some sleep.)  I went home and fed the cats, wondering nonstop who would be the pulmonary on call.  Drove over to the U, went up to the 6th floor (which is transplant) with my overnight back and my Surface with some freshly-downloaded books at 3:15 in the morning, bumping into my nurse, Kelly, on the way.  Kelly was great.  I had her both nights for the first UCH admission.  My day nurses on transplant were really nice too.  I feel badly that I can't remember their names.

There's always something about night shifters that I connect with, though.  I can't do it myself anymore, but night shift is my kind of people.  Somehow.

That week, I got tapped three times.  Each time was exquisitely painful.  And that's from a woman who's three month postop from chest wall reconstruction and I don't take anything for pain.  Oh, and I'm walking around with two fractured ribs. 

But I'm getting ahead of myself.

The two nights I spent on Transplant (floor) were a blur, due the sleepless nature of everything.  I got tapped by a resident, a Dr. Mike (I've chosen to not use the last names of my UCH docs).  I was his 15th tap ever.  (I asked after.  I didn't want to know.)  He got 1.5 liters of fluid out from my right pleural space.  I was breathing GREAT in comparison.  The hospitalist attending was a nice guy, and sort of patted my hand through it.  (Why the fsck they don't get a nurse in the room for these procedures bowls me over.)  The first tap was the least painful, probably because less overall pleuritic pain (when lung tissue has friction against the chest wall), because my lungs were essentially floating around in more fluid initially.  And maybe because he was using a vacutainer.  That's my hypothesis.  Might be bullshit. 

He stopped at 1.5 liters, because that's typical to not take too much at once.  (Most people don't GET more fluid than that in their pleural space, but that's beside the point.)  I wanted him to take it all, but I understood why he stopped.  I was breathing much better right away.  The pain sucked.  That's all there is to it.

The second tap was done in Interventional Radiology by a fellow who'd done MANY taps.  That tap was the most painful.  He was surprised I was feeling anything, but the tears rolling down my face didn't really slow him down.  He pulled out of the left, syringeful by syringeful and I felt every single bit.  At least I had a nurse to hold my hand, though. 

That sounds stupid, my insistence on a hand-holder.  That shit hurts.  So it isn't stupid.

Throughout this, and at a decent hour, I texted Jim, one of my attending docs.  He was in the ICU, so he was looking through my chart and was aware of everything going on.  I thought he was "on service", meaning he would be my pulmonologist (and I was relieved in this notion).  But he didn't get formally consulted during the first admission, and my memory is blurry (and sleep-deprived) so I don't think I even saw him.  I saw Jon, one of my fellows, though.  He introduced himself to Mark (who came straight from the airport) as "one of my coworkers."  He was wearing a T95 mask, because I'd been put on tuberculosis precautions....the thinking was that since I work in the pulmonary clinic, I may have been exposed to TB.  (I made a huge stink about that.)  I said, "(Jon), you know damn well I don't have TB.  Take off the mask."  (He did.) 

The working theory of what caused this at the time was that this had been essentially a slow leak building up from the surgery, and once drained, everything would be done.  The leak would theoretically heal.  They worked me up for a lot of infections.  So.  I am positive that there are a lot of different viral infections I do not have.  So, I guess that's something.

Kelly was my night shift nurse again Tuesday.  I had a really great day nurse Tuesday.  Likely because I was on TB precautions and the plan was to discharge, I saw my day shift nurse Wednesday for 40 seconds from her arrival at 7am until around 2pm, when we left.  I almost said something about that.  (i.e. "What did you chart that my lungs sounded like?")  I wasn't feeling snarky enough, feeling that karma would take care of that issue.  Every other single person had been good to me.

I went home.  I said to myself, "Self, maybe it's over now.  Really over. With the setbacks and the drama and crap....maybe from here on out...I can just get better."  And of course, I kept waiting for the other anvil to drop.

And drop another one did.

Thursday afternoon, Jim called.  "Michelle, the tapped specimens grew out bacteria.  Both of them."  I didn't say much at first.  He was gonna bring me back in.  And he had to.  I have fucking bacteria in my pleural space, I was thinking.  And there is only ONE way that it got there.

.....and I'm gonna have to return to the story later, because I'm keeping Mark up.  I have to get up early, and so I need to be a good girl, take my Trazodone and go to bed.  A lot more happened.