Monday, December 17, 2012

Wrong procedure! First lesson, listen to your patients.

I was planning on writing about meeting another gutless cyclist on a local shop ride, on Saturday, while I was taking it easy and still feeling pretty rotten after getting out of the hospital only 36 hours prior.

And, before that, I had intended to write a post about how becoming suddenly and cripplingly ill, and landing in the hospital for a few days does things to my perspective and priorities - and I don't mean that in the cheesey, lifetime special, sort of way. I mean, sincerely, that on Saturday after getting out, I rode my bike like it was both the first and last day I ever would again. And, it was glorious... and rainy.

And, finally, on the list of upcoming posts is one that was triggered by a request from another blogger. She asked a few folks with Crohn's or an ostomy to write about how their age of diagnosis effected their life course and development.

But, instead, I find myself with a burning desire to write something short about the events of the day. At this moment I am feeling frustrated, close to downright angry. In followup to my recent illness I was scheduled for a bunch of appointments with my primary care physician and GI doc, and one minor procedure. However, my GI had to go out of town, and instead I was rescheduled with another physician for both my upcoming appointment and procedure. That's fine. Stuff happens, as inconvenient as that is.

Today, when the scheduler called me with the normal ramble about when to arrive, where to arrive, etc, she also said, "The procedure will take about 3 hours and you will need to have somebody pick you up afterwards".

Whoa! What!?

I said, "I think you must be mistaken. I do not need to be picked up because I will not be under any sedation. And, I think you have me down for the wrong procedure because 3 hours is too long".

Apparently, somehow there was some sort of major miscommunication and I was scheduled for a colonoscopy with general anesthesia! So, the scheduler apparently called the physician doing the procedure to try to figure it out. But, still the same thing! She told me that was the procedure I was scheduled for and was supposed to have.

Now, I'm a well educated and well informed person. I have no memory deficits, and I don't get confused about medical details. If there is one thing I know, it's that a colonoscopy 1.) won't work 2.) isn't appropriate followup!

At this point, I asked for the physician to call me so we could try to figure out how this confusion ocured and fix it.

The physician then had a medical assistant call me instead of calling herself. The medical assistant was in no way equipped to have any sort of conversation about the appropriateness of procedures, and was only able to reiterate that I was scheduled for a colonoscopy. She was very nice. I expressed my frustration that the physician had not called me, and that I thought instead of a one way conversation we needed to have direct two-way communication before I showed up on Thursday.

So, what happens next? The scheduler (who has some medical knowledge. a retired nurse ?) calls me back and reiterates again that all they are showing is a referal for a colonoscopy and that is what I am being seen for, and that I will be under general anesthesia. And, the tone was now changed, as if I was being a difficult patient and was making unreasonable and outragious demands: to not show up for a procedure that isn't correct or beneficial in followup - nevermind everything else.

Is this groundhogday the medical version!? Am I speaking a different language here?

Any patient should be able to voice concerns when they believe they are receiving or in danger of receiving the wrong treatment/surgery/medication/any care!!! It is our job to advocate for ourselves. If we don't, many times, nobody else will.

One of the first lessons I learned as a Paramedic was to listen to my patients (the coherent, lucid ones... and sometimes, especially the ones who aren't). They often have the answer. They know what happened last time, and can often be a great crystal ball for predicting what treatment will work best.

Sadly, I have yet to be taught that lessson at the Yale Medical School, either in the classroom or by example from the physicians practicing here at the teaching hospital.

And, here's an interesting scholarly article about how these sorts of errors in performing the wrong procedure or performing it on the wrong patient happen.

For the sake of my own health, I'll remain a trouble maker of a patient in their eyes. Who in their right mind would go under anesthesia if ANYTHING at all seemed wrong about the plan?

Friday, December 14, 2012

A history of... shhhhhh.....crohn's. And, learning to accept.

Why does it seem like so many of my Crohns and ostomate friends have been getting sick lately? Or having unpleasant setbacks with their disease?

Is it something about the time of year? The stress of school, work, and family as we all get closer to the end of the semester and the holidays?

"I never make it through finals without having at least a little flare up", my friend Jacinta said. I was taken aback. Two or three anticipated flares, often landing her in the hospital, as the price of academia?! Seriously?

This was in 2003, when I was working full time as a Paramedic and living in a tiny Philadelphia appartment. She was my housemate, who also had Crohns. She was one of... no, scratch that. She was THE first person my own age who I met who had Crohn's Disease, or IBD at all for that matter. And, she was a stunningly beautiful, long legged, bubbly, athletic, Ivy-league lady! Maybe in the back of my mind I had always thought people with Crohns were hiding somewhere because they were too socially damaged or otherwise unpleasant to come out. And, who would talk about Crohn's anyway? Wasn't it something to be ashamed or embarrassed about?

It might seem strange that I had never previously met anyone with Crohn's, in all of my years as a child going to doctors appointments and all of my years in and out of hospitals from the age of about 8 until then. But, somehow, it's true. I was never offered the opportunity to talk about my illness, or connect with others who were experiencing the same fears, pain, and often isolation that I was - all on top of the struggle of surviving elementary, middle, and then high school!

My parents treated my illness as a burden, or as some sort of punishment from the universe for something that I should have done better in my childhood. They alternated between avoiding even saying the word "Crohn's", and shaming me for it, and sometimes oversharing details about my illness with friends and relatives in ways that were the exact opposite of supportive. But, for the most part, they defaulted to pretending that it was non-existant, something to be hidden away. During this time, there was no internet, then the internet was new and my family didn't have a computer, and then finally with computer and internet access I didn't even know that I might be able to find community or information online. There wasn't the same easy access to online community and resources that we have today. And, I'm not even all that old!

As the years went on and my disease worsened, with increasing failure of treatments, and hospitalizations tallying in the tens, my parents years of shame and denial left them clearly unprepared for the reality of having a critically ill pre-teen. At one point I was even threatened with something that made absolutely no sense to me at the time; that if I didn't get better/be a better patient/do whatever it was that they thought I should be doing at the time that I would be "pooping in a bag". That sounded pretty gross, and also like a sick and twisted threat. I remained mystified by this for years afterwards.


Back to Jacinta, my lovely Crohnie housemate in a slightly overcrowded West Philadelphia apartment.

She wasn't ashamed about her illness, or how it had effected her life. She was happy to talk openly about growing up and being diagnosed with Crohns, giving up salad for good, what past treatments with Humera were like, how a fuzzy blanket and a heating pad got her through chills during flare, and finally... about the time when she got sick in high school. She got really, really sick and ended up not being able to eat for months. She refused to be hospitalized and stay home from school, instead electing feeding by a nasogastric tube, which she inserted HERSELF! When she finally did end up in the hospital, after months of trying to go on with life despite her illness, she was in pretty bad shape and ended up having ileostomy surgery. At that point, she still stayed positive and adjusted to her new life. Around the kitchen table in Philly, she told funny stories about having to educate new resident physicians about her altered GI anatomy, and about botched bag changes.

I was simultaniously in awe of her, floored, and horrified. But, mostly in awe of her and fairly sure that I would never be able to be as accepting of my own IBD as she was, and definately wouldn't be able to adjust to living with an ileostomy if, God forbid (!), I ever had to.

Yet, somehow I have adjusted.

Sometimes I have a hard time staying positive, especially during weeks like this when I've spent more time in a hospial bed than my own. But, I do find that one of the things that helps me the most is connecting with other people who have Crohn's or an ostomy, and sharing my own experience. Maybe my experience will help somebody else adjust to having an ileostomy, but even if it doesn't acheive that specific aim, I hope that it at least helps remove Crohn's disease from somebodies list of things to be ashamed of or silent about.

And, just as important as connecting with other Crohnies and ostomates, is being comfortable enough with non-Crohnie friends to allow them into my life. Keeping it a secret means no hospital visits! And, as far as I'm concerned, friends and friendly faces make a hospital stay that much less boring, anxiety-making, and unpleasant. So, friends, if you are reading this, thanks so much for all of the support and cheer this week!

Thursday, December 13, 2012

first hospital trip in a while

I just got home from the hospital after a four day stay. You guessed it, abdominal pain. But, in a whole new and unfamiliar way. On Monday night I started having sudden onset of searing pain just above and to the side of my ileostomy site. I watched it for a few hours as it got worse and worse. Finally, when chills set in four hours later, I decided it was time to go to the student health center (required before ER in order to appease the health plan gods). They heard my medical history and said, "We need to send you to the ER. We have to assume there is something seriously wrong."

So, I went to the ER at the huge Yale hospital and stayed there till 6am when they finally admitted me. It wasn't an altogether unpleasant ER stay, despite some nervousness about running into fellow PA or med students. One of the residents reviewed radiology problems with me for a good two hours, which was pretty cool. It was nice to be treated as a future colleague, and not just a patient. It's even different than being a Paramedic and getting sick. Suddenly, all the physicians and PA's want to teach me about everything that comes up in treatment - which is sometimes exhausting and sometimes a relief from thinking about how much pain I'm in!

If there is one thing that can really turn a hospital stay around, it is amazing friends. I have truly been bowled over by the kindness of my friends, housemates, and classmates this past week. I don't even know where to start, but I know I couldn't be a luckier guy.

A real post about thoughts on leaving the hospital, fragility, and outlook on life will be coming soon.

For now, I'm tired, and enjoying cutting my bracelets off! Then I'm going to bed. My own bed!

Saturday, December 1, 2012

Winter begins with snowfall and December 1st

You know it's officially winter riding when there is snow on the ground, regardless of the actual calendar season.

Today marked the first riding day that I wished for neoprene shoe covers vs my fall windproof ones. And, handwarmers inside my gloves. Alas, I had neither on. So, I had to conjure the mental fire on my handlebars that one of the New Haven cycling legends swears by to keep him warm.

During the winter I tend to introvert, which becomes something pretty close to isolation at times. I start enjoying the grey skies, and the silence of the road, and my own company. This year in particular, the reprieve from racing and lack of challenge from others is welcome. I pushed hard into both road and track racing for a long March-September 2012 season.

I saw a few lone-wolf cyclists in local team colors, peddling in the oposite direction, chilling in their small ring, and looking like they were enjoying the grey day as much as I was. A nod of acknowledgment, and comraderie from a distance. But, no summer giddiness and doubling back mid-road to see what route I'm on and if you can join in for a few more miles.

Here are a few pictures of the grey Connecticut landscape. Yes, that is a hint of snow hiding in the photo behind my bike. And a local racer caught going the other direction.