I gave Mark the url to this site.  He read the whole thing yesterday.  He is really supportive of me, and of this whole surgery idea.  I don't know how I'd go about planning on taking something like this on without him.

He thought it might be good to open up this site to visitors.  Which I was considering.

But I was just poking around facebook, and I sort of got my fill of the image crafting.  (Really? #monthofgratitude @friendname @friendname @friendname I'm so blessed!!! by everything!!!!  <token photo of Buddha or flower with generic inspirational quote here> or <selfie that was taken a few times to get the best shot> <or duckface with alcoholic beverage in hand>)

So sharing this blog thing?  Nah...

I'll keep my surly to myself, and my husband, who is stuck with me, because I also have keys to the house.
(And I love him and am deeply grateful to have him, but I don't have a striking need to tell anybody but him that.)

I wrote to Michaelangelo for over twenty years.

I wonder if dead people miss having you talk to them.....

Kelly, the RN (?) coordinator, called me today.  Dr. J has been asked to do a case in Texas that day, and her flight was pushed back because the case was pushed back.  Kelly offered that I maintain my plans, do the CPET test and meet the team that day, and that Dr. J would do a phone consult with me later that week.  Or, of course, I could have rescheduled and moved around the schedule of six adults and one child.  And wait.

So, I'm going to meet the team.  This was deflating enough.

But the visit will (in addition to the RN, I'm assured) be with a PA, a physician's assistant.  A PA.  I've been in health care for 10 years now, and I have clocked not a single positive experience with a PA.  Not for my own health care, because I would never-not-ever go to one if I had a choice of an MD or NP.  And I've had horrific experiences with PAs in the ICU. 

It's a terrible bias, and I'm sure this PA is lovely and competent.  And not a physician.  And not a nurse.  My bias is unfair, and I haven't met every PA in the world. 

Many, many physicians and nurses (NPs, CNSs and RNs) share this bias.  An MD (and DOs?) goes though an educational process that should more accurately be called hazing.  Only the strong survive it, and the longer their training, the worse the hazing.  The process of school, internship, residency, fellowship...weeds out the weak, and the stupid, mostly.  The process does not select out for "psychologically impaired," "alcoholic," "asshole," etc.  But four of the five pulmonologists I've asked (either directly or not) about my pectus  is an asshole to a chunk of people.  (Sometimes enough people that the word "notorious" is not a bad stretch.)  The fifth one I asked spontaneously, because he's been practicing forever, and he's cute and adorable and sweet and knowledgeable and he told me that my pectus doesn't affect me. 

So.  Clearly "cute and adorable" aren't priority characteristics in a physician for me.  (Although my PCP is, which I consider to be a nice bonus.) 

An NP (or CNS) is a nurse with a master's.  A NURSE first and foremost.  An NP has a bachelor's, and the majority of them do time as an RN, and then go on to the three-ish year master's.  That includes clinicals, so patient face-time.  (MDs do clinical time from internship on.)  There is hazing here, too, but less severe and more cultural than structural.  It would be better for us this hazing were structural in the sense that we call that first year a nurse residency.  (It's rare.)  This process weeds out the weak, the uncompassionate and the unethical, mostly.  It doesn't select for "intellectually brilliant," or "psychologically stable," "alcoholic", etc.  I am far more likely to trust a nurse I just met than trust a physician I just met. 

Just as it's rare to meet a truly stupid physician, it's rare to meet a truly heartless nurse.

(It's a little bizarre to be a nurse and say that.  Because that's not a characteristic I think about in myself.)  (I'm in my head, and I think I am very often an asshole.)

A PA has a bachelor's degree and three years of doing....something, I don't know what.  I don't even know if they talk to patients in that time.  Having two bachelor's degrees, and a handful of credits towards a master's makes me "better schooled" than any of them. It's hard not to think of a PA as being someone who couldn't cut medical school either due to lack of brains or hard work.  And at the same time, this person maybe had ideas like one PA who said to me, "Why didn't I become a nurse?  The bedpan factor."  As if a) that is even remotely an accurate way to distill my career choice and b) he wouldn't ever deign to sully himself with such menial and disgusting work.  So what does that make a PA?  Stupid?  Lazy?  Entitled?  Arrogant?  Deer in Headlights?  Prissy?  Weak-stomached?  Did I mention prissy because I'd like to say it again:  Prissy?

I'm not excited to go meet my new PA.  I have not had good experiences with them.

She's probably lovely.

I'm being unfair.  I'm sure her GPA is better than mine.  (No, I'm not.)  Or that she can be trusted.  Maybe.  I'm sure she's a nice person who wants to help people.  And somehow, I'm supposed to trust her to explain how they're going to rip my sternum up out of the divot in my chest.  Hopefully, she's just going to tell me what the surgeon said.  She better damn well have taken notes.

I will try and not ask for her transcripts.  And a resume.  And her SAT scores.  I will try (but I cannot guarantee) to not direct all of my questions to Dr. J's RN.  Yeah, I'm not gonna guarantee I won't do that.  Because I haven't met any of these people, and I will still trust the nurse to tell me true things. 

I have to be okay with it.  If I want to move forward in December.  I'll be okay with it.  I'll talk with Dr. J on the phone.  Maybe Skype.  I've never used Skype. 

Yeah. 

I'm disappointed.  It's fine.

I cough every day.  All day.  All the time.  I have to take some type of medication for neck pain at least every other day to deal with the muscle aches from the cough.  I try an alternate tylenol and ibuprofen so that my liver and my kidney take turns getting hit. 

I cough.  All.  Day.  Long.

Not real happy.  Mark will help me to be polite to the PA.  I'm sure she's very nice.

Kelly, the RN at Mayo, called earlier this week to change the time of the appointment.  The flight might be close, but Dr. J will see me at 3pm now.  Even though they worked me back in the same day, it set off a minor anxiety attack, which just reminded me how thin the veneer of calm I have about this whole thing.

I did some homework today, trying to keep ahead of the semester so that the trip to Phoenix and the folks coming out the weekend afterward doesn't cause too much havoc. 

I worked on the videos page. 

t's amazing to me how much information is out there now.  Twenty years ago, I just didn't know.  Hell, ten years ago, I thought that if that the large teaching hospital that I work at....the only one for hundreds of miles around....if they didn't do it, then nobody did. 

And when you've lived with it for 44 years, I suppose, Dr. Google doesn't strike you as a serious place to find any information, much less medical information.  It never occurred to me to google it, precisely because I'm a nurse.  I've had access to dozens of pulmonologists over the years. I've had access to some cardiothoracic surgeons over the years, too....(sadly, none that I would have allowed near me with a scalpel.)

One pulmonologist I trusted told me, "Go to New York.  Don't waste your time here."  And at the time, that seemed....like I was making a big fuss over nothing, or that it's unreasonable to travel for a procedure.  If the U didn't do it, then maybe it really is too risky.  A trip to NYC for the weekend sounds fun, but going there for a surgery was somehow something completely different.

So.  We shall see.  I'm going to Phoenix to find out.

Oh, and I did do a little digging into the physician that Tami, the paramedic talked about.  He's four years out of fellowship, so I asked somebody I could trust about such things...(i.e. if your mom needed cardiothoracic surgery, where would you send her?)  I got a different name, a more senior attending.  I haven't ruled out going to see him to see what he has to say.  I'm going to go ahead and schedule a surgery with Dr. J, but I'll be waiting for six months.  So I'm not in a hurry to see this guy.  Besides, I know his answer will be that he'd likely be willing to consider the Ravitch for me.  It's probably worth 45 minutes of my time to talk to him.  Especially if Dr. J can't do the Nuss for me.  So.  Maybe February, when I'll probably be squirrely from the wait.  (As opposed to now...?)


At the moment, building stuff for this blog...I read what I wrote in September that I want to run a 5K.  That sounds as ridiculous and stupid to me right now as if I would suddenly sprout wings and fly off to Dharmasala.  Seriously.  Maybe with a tail, too.

Just no way in hell.  Gonna die like this.  My only way to weight loss is fasting and calorie restricting because my heart can't keep up.  Gonna die sucking on a ventilator.  Or maybe ECMO.  Unless I get my hands on a vial of insulin first.  Not doin that shit by choice.  Running.  Who the fuck am I kidding.