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.
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.