Tuesday, April 20, 2010

Sorry Goes a Long Way

(This post is probably not for squeamish readers) Let's rewind to a few days before New Years Eve, 2008. I had been having headaches every day for about two months and, after visiting a Neurologist, I was sent for a "routine" MRI to check out the old brain. It was the kind of MRI where contrast dye is injected into your veins midway through to get a better image of everything. So I arrived at St. Francis Hospital, changed into my stylish paper gown, and was soon being inserted into the MRI machine. It was a little tight like any MRI machine, but I knew the drill and was just hoping my headache mystery would be solved. Halfway through, I re-emerged and was told to hold "perfectly still" by two MRI technicians standing over me. My head was secured, so looking at anything other than the fluorescent lighting above was not option. The needle went into my right arm and one technician said casually to the other, "Hm I'm not getting any blood when I pull back" (note: You must get blood when you pull back on the syringe because only then can you ensure that you are really in the vein). The other responded, "I'm sure you're in. Go anyway." They injected the dye, and well...they missed.

The dye leaked into my arm and, within seconds, I felt the most intense, burning pain I had ever known coursing through my body. Having dealt with chronic pain my whole life, my threshold is pretty high. But this was the kind of pain that makes you scream. I'll never forget those moments - the scared look on the technicians' faces, the way they scurried out of the room without explaining what was going on, my body still strapped to a machine. Within moments I had a fever of 103 and my arm swelled like a balloon animal (except not as cute). The head of the department came in and, even then, I knew he wasn't saying much for fear of legal repercussion. It was robotic. All he offered was, "It appears the dye has infiltrated your arm (really, you ass?). That is the pain you are feeling. Now I'm not saying you are exaggerating (oh phew, I was worried), but it's rare that we've seen someone in so much pain from this (so basically you are very clearly saying I am exaggerating). We do not like the temperature you are running, so we are admitting you into the hospital."

At that point, I didn't think it could get worse. But he next four days were a blur of needles, pain, procedures and medical mishaps. I wont go into all the details, but one episode is pretty central to this post. The Neurologist who had initially ordered the MRI attempted to perform a spinal tap on me. He wanted to make sure the fever i was running was not from an infection in my spinal fluid. It seemed unnecessary because it was pretty clear the fever was due to the radioactive dye in my body, but before that day I couldn't say enough good things about that doctor. I knew he cared comprehensively and compassionately for my grandfather before he passed away and I knew my parents trusted me in his hands. But that day, this doctor walked in and didn't seem his cheery self. He was complaining of "sharp pains" in his leg and of "having a bad day". Does anyone else feel like that's a odd to admit to a patient you're approaching with a 22 gauge needle? He got right down to business. First, he made my mom and her sister Ann (my "other mom") leave the room, saying they would be a "distraction to him" (Warning sign #1). There went my hand to hold. When I asked for a "minute" before he began, he said "he didn't have all day" (Warning sign #2).

As I finish this story, keep in mind this doctor knew I had spinal arthritis and, consequently, this procedure would already be more painful and risky for me than the average bear. According to the nurse who was in the room, he injected the numbing agent and did not wait nearly long enough before attempting to get a sample of spinal fluid with a second needle. Not only was I not numb, but he missed and hit my vertebra! He failed to get the sample that he needed and, even though I believed I had felt the worst pain the day before, this trumped it. I pleaded with the doctor to stop for a moment, but it was like his alter-ego had stepped in. He snapped back, "Listen, I already told you I don't have all day. Now suck it up. Everyone has their cross to bear, Maya." After days of torture, I had reached my wit's end. I said through tears, "Okay that's it, you have no idea what cross I bear and no right to treat me like this. Get out of my back and out of my room!" (Impressive, huh?) The nurse held me and just apologized for the way he treated me. Surprisingly, that was the only warmth I felt from the staff during my stay at St. Francis.

So Happy New Year!! Right? The only good memories I have during those several days was the family by my side throughout it all and John who drove 6 hours to be by my side. I remember sitting with my mom who stayed every night (she always has - I've never spent a night in the hospital without her). We were just sitting there counting down until 2009, listening to my roommate Paula complaining (and farting, but I wont elaborate there). We just laughed and laughed at the absurdity of the situation and the way we were ringing in the year. My dad joined us the next morning as always and I knew it was going to be okay.

Both fortunately and unfortunately, I will never forget those days. Unfortunately because, of course, it has made me distrusting of medical professionals and procedures (especially MRIs). I think that's only human. While I'm working hard to overcome those feelings of distrust and anxiety, I'm sure they will never disappear completely. But I also learned to truly advocate for myself during the fiasco. As someone who will always be linked to the medical world, this was actually an invaluable lesson for me to learn. After all, if I don't have my own back, who will? As I found out that December, doctors are not "all-knowing". They are not always right or fair or kind. They are human, just like I am. And most importantly, they shouldn't be leading my treatment - they should be partnering with me in it. Could I have learned this lesson in a less invasive and traumatizing way? Sure. Would I trade it to have those days back? Probably. But I have to see the silver lining somewhere because otherwise, when I think back to this experience (which is quite often), I would be plagued with anger. And I don't deserve that.

I know that the entire experience would have been much less traumatic if I heard two simple words from any of those doctors: a simple "I'm sorry." This phenomenon is actually discussed very well in this New York Times article called "Doctors Say 'I'm Sorry' Before 'See You In Court.". It explains how one doctor who made a major mistake courageously admitted it. The article also reports an interesting statistic: "At the University of Michigan Health System, one of the first to experiment with full disclosure, existing claims and lawsuits dropped to 83 in August 2007 from 262 in August 2001." It identifies prominent academic hospitals such as Johns Hopkins and Stanford that are moving towards more disclosure and communication between doctors and patients. I really hope this movement spreads because there is definitely something to this. Doctors are some of the smartest people around us and you need only to read a few posts back to see the reverence I have for the good ones. But really, saying "I'm sorry" - especially when someones pain in the direct result of your actions - is so basic. It's what we're taught in conjunction with tying our shoes - an empathy for others, admitting when we're at fault.

Today I've forgiven because I have to- not for them because I'm sure they've long forgotten me. The forgiveness is for myself because, in this world, we can't always count on "I'm Sorry" to make it better.

7 comments:

  1. your positivity after such a traumatic ordeal is amazing. living with a chronic illness always makes me look a little harder for the silver lining, too. thank you so much for sharing your story.

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  2. Jodi,

    Thank you so much for your thoughtful comment. I hope you'll keep checking back :) I have been looking through your photos and I am blown away. you have a beautiful way of looking at the world and I personally love all the photos of dogs and flowers. Can't wait to meet you!

    ~Maya

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  3. Oh my goodness, this is a crazy story. I'm so sorry Maya!

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  4. Hey,

    I have a friend suffering from Ankylosing Spondylitis, he is coming to NYMC as a masters student and wanted to know if health insurance in US cover for Infliximab or Etanercept treatment? Please let me know if you know anything about it.

    Regards,

    Pradeep

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  5. Hi Pradeep,

    Thanks for taking the time to check out my blog and thanks for your comment. I wish I had an answer for you about those particular treatments, but I'm really not sure. It depends what health insurance he will have. Spondylitis medications are outrageously expensive (can run over $1000 per treatment), so a lot of insurance companies really give you a hard time before they'll pay. It's a hassle, but he can probably work it out - at least I really hope he can. Please let me know if I can do anything...I apologize that I can't be of more help.

    All my best,

    Maya

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  6. Hey Maya,

    You have already been of great help. I will let my friend know. You take care.

    Thank you,

    Pradeep

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  7. Great post and I"m glad that you re-shared this. I am going to get an MRI in about a month for my hip. Haven't had an MRI in YEARS and YEARS! Back when my mom was my advocate. Thank you for sharing your brave story and reminding me that advocacy for your own health is vital regardless which doctor you visit.

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