Protected: ….invisible killers

I should be studying…shoot me.

I can’t believe October is more than half way over. Time has absolutely flown this school year, not that I am complaining but I can’t help to marvel at it nevertheless.

Fall is my favorite season by far. I love the windy days where the leaves fly down the street. I love the brilliant hues of crimson, orange and gold. Despite its effect on my body, I love the chill in the air and clear nights where you can begin to see the winter constellations.  I have always believed that the sky is especially blue in October. I’m a little crazy in October.  On these October blue days I just can’t stay inside. I want to join the dance of the leaves and wind. And run through the cold grass barefoot. And then lay there in the cold grass as the sun sets and the blue fades to lavender and pink and then dance again as the orange moon rises and the stars fade in.

But I have nearly missed this Octobe with busyness. It saddens me, I must make up for it. Next weekend, I am going to Roanoke and the Shenandoah Valley and there I will dance amongst my mountains. I am excited.

see the pretty shades of grey

We have been discussing futility in our medical ethics class.

      I come from a strange family that talked about everyone’s wishes as far as life saving measures go as soon as everyone was old enough to participate in the conversation. I know my parents’, paternal grandparents’ wishes and my sisters’ wishes. None of us want to be kept a live by machines if we are brain dead or in some sort of vegetative state and we are all organ donors. I even know where my parents want their ashes spread. And during that conversation none of us seemed to really be really afraid of death. I mean any of us would be devastated by the lost of any family member in our lives but as far as the actual dying goes we are not that freaked out by it. And I realize this is weird and maybe you think my parents are morbid, sick and twisted (yeah they probably are).

      I am not sure if its fighter pilot off the carrier in the dark factor (my Dad and Grandfather…yeah so this should explain a lot about how Type A we all are….) or the fact my Dad is a physician. The fact we all practicing Christians probably have something to do with it, we have been indoctrinated that it certainly doesn’t get worse after you die.  Personally I can remember having this conversation and thinking back to my experiences as a patient and thinking I would NOT want to spend an extra day dying in an ICU or a sterile room somewhere just to have another day.

            So all of this was not foreign to me when we started talking about it in medical school but I was the exception. I also was surprised at how many of my classmates (including two of my really close friends) want to fight for their patients and keep treating at pretty much all costs. “I am going to be the kind of doctor who fights till they are dead!” one of my classmates exclaimed. And I think to myself but define dead… we can keep people biologically alive medically for an incredibly long time. At some point you have to say to the patient, to their family what we are doing is more torture to delay the inevitable than treatment. But I am a little horrified by how callous I sound. Here my classmates are here to fight for their patients’ lives and I sound cynical and apathetic

One of my friends said that futility ethics are age biased, everyone fights to save a child but we don’t go to the same efforts to save an adult. I told her that may be true to some degree but an adult has the capacity to make a decision and children’s physiology allows them to be considerably more resilience. But am I simply reciting the very bias that leads to very discrimination I am supposed to be disproving?

Another classmate says, “There is always hope for a miracle! I will never JUST accept something is hopeless without a fight.”  Hope a word that I toss around quite a lot. Hopeless that is how many of my Eastern European peers describe the children I spend so much time fighting for.  One could argue that considering the resources of Eastern European society, the child’s illness and the damage already done that it’s futile to spend money and time to medically help them. I never consider giving in, I don’t see futility, I see injustice and potential. I want to be a rehab doc…I am going to have muscular dystrophy patients on vents and I am going to be one who helps patients pick up the pieces and help them decide life is worth living. And I am again a little horrified by how callous I sound.

I am sure you are all praying that I never doctor a dying family member of yours. Are my personal ethics inconsistent? Am I biased? Am I callous and cynical? Am I advocating for mercy killing of the terminally ill? 

I freak over quality vs. quantity of life arguments in the beginning of life situations. I become one of those hostile protestors in a power chair with a BIG sign that says I DARE YOU TO ASK ABOUT MY QUALITY OF LIFE. Yet I am quick to be like to heck with quantity of life with someone who is comatose or close to it on life support or who has exhausted medical therapies, I become a white coated figure with a big sign that says LIVE IT UP WHILE YOU CAN or LET ME TORTURE YOU/Your Loved one FOR A COUPLE MORE MONTHS..your choice…but I think its pretty obvious personally but its your choice…

I see the inconsistency. I see my shades of grey. I see the conflict. I see my biases: my disabled bias, my religious bias with its unwavering belief in an afterlife, my patient bias weaving their different hues into a personal ethic that withstand two opposing forces.

I think I come down here, if it’s me, if it’s my family I know what we want, I know what I want. If it’s my patient, my job as a physician is to find out what they want; my job is to encourage them to have that strange morbid conversation with their families so we don’t spend their last days trying to muddle through what we THINK they want. And then my job is to fight for what they want. If we don’t know what they want, well that’s when the crap hits the fan. I am hoping that experience shall teach me how to lay it out for a family without out judgment or bias and without large signs. In general I think I should leave the signs at home, they are bulky and they get in the way.

my heart will choose to say

This e-mail arrived in my box this morning from the British lady who I met on the airplane who just started working with one of my kids in Romania, Aurel( beautiful 9 yr old who is blind and deaf, has Sticklers’ Syndrome and gets minimum human contact):

Hi Amy,

Thank you so much for your encouraging e-mail. I was planning on e-mailing you again tonight as I have had a great time with Aurel today. I found the tennis shoes with his name written all over them and put them on his feet. They were very familiar to him, you could just tell. I took him into the playroom and I tried different things with little success. In the end, the simplest thing worked the most effectively. He is craving human contact I think so I managed to get him to walk along a wall, touching it with his hands and when he got to the end, I swung him around, tickled him and gave him a big cuddle. We kept repeating it and I could tell he was motivated by the contact at the end. Whenever he looked like he was about to give up, I’d blow gently onto his face so he would know I was close and he would keep going. So a small breakthrough, but it was nice to see him smiling and laughing. Today was the first time I saw him do that.

I will ask Jen about the board idea for him. I need to e-mail her, but wanted to contact you first.

I’ll be keeping in touch. Thanks again for your support.

Small breakthroughs, small breakthroughs. Such blessings.

to the orthopedist YAR!!!

SO I went to an orthopedist today to make sure I have someone around if there are any mishaps during clinical rotations and in case my hip fails and I am not on my parents’ or residency insurance.

Its a pretty funny story in a way. SO I get escorted from the waiting room to the exam room and the aide comes in and asks so are you supposed to have x-rays? I reply, “Well I am a new patient but i would assume they want AP/Lateral Pelvis.” I get an amused glance. She sticks her back out the door for about 30 seconds and then says yep. Ok right this way.

I got radiated for about the billionth time (my poor future mutated children….and mutated little pre-cancerous cells). Then I went back to the exam room. Then a nurse comes in and says she wants to clarify my history. I feel for her. My surgical history is long, convoluted and sort of unbelievable for a 23 yr old medical student. Anyways, we get through it, she seems confused. I try to help her. I spelled K N I E S T (LK, it was only once this time….and as far as I know there was no googling ) and explained it.

Then the doc came in sans resident or medical student which immediately made me like him. Then we go into a 5 min dance where he asked me some unrelated questions about what I wanted to go into (he had no idea what peds rehab was beyond…oh so kids with spinal cord injuries?…but thats typical), what year I was, then asked me where i was followed as a child, what my Dad did, where my parents lived and finally so Kniest, what does it do?

I explained it. I realized just how weird this was for everyone, a 2nd yr explaining a diagnosis to a clueless attending. We looked at my hip x-rays. and decided they were not that bad (by not that bad he means no surgery, for a 23 yr old there were that bad…if that makes sense…really no change though since last year) So next year? Do you think you will have any problems? I will be like everyone else except on wheels everywhere except surgery. I don’t that should be a problem, you can stand for like an hour right?

On a good day but I can’t stand for 5 consecutive hour procedures even then.  “Oh” he says.  “Also I don’t think that would be good for my joints.” I say. “OH” he says.

(captain subtext says: Oh my freaking gosh, you are joint surgeon…this should not be a big surprise…I use a wheelchair a W H E E L C H A I R to get around, I can’t stand for 7  hours….some days I can’t stand for 7 minutes)

Then NO LIE…he gave me a 10 infommerical on the wonders of doing an orthopedic rotation next year. Initially I was like where is this going but then he gave me a nugget of info for which I will always be grateful. Hand and foot surgeons SIT DOWN when they work. He ends with, “Come hang out with us, we could make it work., it would be no problem” I thanked him after an effort to downplay the shock that must have been all over my face….me play orthopedist? well I suppose I do thrive on irony.

He examined my hips well he sort of did with me sitting in a chair and then was like if you have emergencies next year or need to be seen right away here is my e-mail. I was really surprised it was his professor e-mail the one that I would use to ask him a question about lectures. I was like, are you sure sir, this is sort of abusing my patient/medical student privileges. “Well, there has to be some privilege to being a medical student, right?”

Right..

what a weird, weird doctors’ appointment…

SITTING DOWN SURGICAL ROTATION…..SITTING DOWN SURGICAL ROTATION SITTING DOWN SURGICAL ROTATION!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!