Respiratory Distress

Its the middle of the night

when I meet a teenager with a terrible disease

that is a slow, gradual but inevitable death.

Cystic Fibrosis.

She has a giant pneumothorax and a chest tube to let it drain.

Her lung function is 40% of what it should be.

She has done all the right things.

But she is losing the battle.

She has lost 8 kg (20 pounds) in 6 mons.

She looks at me through her oxygen mask with big set eyes that know what’s coming.

…

Another family, another wee hour of the morning.

A father still grieving for his lost child.

is here again with another tenuous fragile life.

in severe respiratory distress.

so bad that I can’t take them, they need to go to the ICU.

as I sit there explaining what will happen next.

Dad reaches out and grabs my arm and says

THANK YOU

I melt into a puddle of exhaustion and awe.

That this Dad in his grief and his worry would reach out and acknowledge me.

….

I have a progressive illness.

If my right hip was a lung.

It would wheeze

and collaspe some times (pneumothorax).

It would sputter and retract.

There is nothing as merciless as watching your child or your own body fail you.

I understand on some small level what that’s like.

The fear. The pain. And the complete loss of control.

But in the end my disease will not cost me my life.

And I can’t help but be impressed by the grace and hope

these children and their families find in these moments

of foreshadowing.

Biking Grace

My low point of medical school was not my step 1 exam studying, not my surgery rotation or even breaking my arm on the first overnight ED shift (ironic), it was a beautiful September day in my beloved Blue Ridge Mountains.  The next day was the start of my pediatric rotation but I had come home for my August vacation. It was a beautiful day and I thought it would be a good day for a bike ride. I did not have space to store my bike in NC so it lived with my parents.  My bike is a big tricycle with a basket. Its not that I couldnt learn how to ride a two-wheeler it was more that my parents and i wanted to spare me the fractures that might ensure in the learning process.

I pulled it out of the garage, mounted and went to pedal.  Seering angry painful sounds came from my left hip and I doubled over from the shock of it. Tears came to my eyes.  Panic filled my head,  what I have been denying for months came to a head.  My left hip was falling apart and while it might be a bike this week it would be walking eventually.  I had been fighting the battle for months with steroid shots, NSAIDs, doctors’ opinions, yoga, prayer, positive thinking, denial, you name it. But in that moment I realized the war was lost.  At 24 yo I was facing the haunting reality that my disease was eating away at my hips, my function and my biggest fear my independence.

My parents came outside having seen me double over.  I brushed it off, got off the bike and told them I think I should get back to NC a few hours early to read over my pediatrics materials one more time and go to church with some friends.   I grabbed my bags, threw them into back of my car, hugged my parents and then proceeded to cry for 2 hours as I drove to NC.

It would take me a whole year to finally muster the courage and the trust to finally take the plunge and fix the hip. The bike stayed in the garage looking sad. I avoided looking at it.

Then finally three years later when I moved into my new house in May, my Mom bought my bike to my new garage. I mounted it briefly and was pleased at how painless it was despite the right hip is going too now. But I avoided it for a few months partly my schedule, partly it was so hot and partly because somewhere deep down I think I feared the humiliation and remind of my vulnerability.

Today I woke up at 2 PM after working an overnight and all of the sudden was determined to go for a bike ride. I went to Wal-Mart purchased a bike helmet, bike lock. I grabbed a bottle of water and I rode through the square and around the block. My neighbors stared at my bike a bit like they might stare at a circus truck and over dramatically veered out of my way.The hills around here are a bit brutal on my inexperienced legs  and I didn’t go very far. My right hip protested a little but it was bliss.

Redemption.  Sweet, sweet redemption.

I am going to do it tomorrow all over again.

The ivory tower has a view

Occasionally I stare down from my ivory tower of my home away from home… my premier world famous childrens hospital into the rainy streets  below and ponder the ironies of where I stand.

I am among a very friendly, although intense community of young physicians who inspire me and challenge me.  They also want to do things like a be a pediatric heptatologist when they grow up or a palliative care/hematologist/oncologist or be a cardiac ICU doctor.  They are impressive and are being groomed to have impressive careers.  Occasionally I get caught up in the mist of it and try to play the game  but win or lose I find myself looking down at those streets and thinking about how different my life will look in 10 years than nearly every other graduate of my program.  Sometimes I don’t know how to fit my career goal into some sort of acceptable academic mold. (Although if I was really trying to FIT IN maybe I would give up the TIE DYE t-shirt collection on call…and actually WEAR my white coat).  WHen people ask me what I want to do with my life….the expression on their face when I say global health doctor is something akin to shock or a sad smile as if to say “We’ll see how long that lasts….”  Then there are my recent attempts into the array of ACADEMIC global health which is just like what it sounds…. a complete paradox. So far it also seems like a mess….its like combining developing world bureaucracy with academic medicine bureaucracy which make s system that makes Africa time look like a New York minute and Eastern European bureaucracy look like excellent customer service… In T-minus 24 months I am supposed to have a plan. I am supposed to live the dream and all that jazz. In a year I need to be turning in applications for either EM or a mission agency.  This is it…this is what I want to do with the rest of my life…but who knew the rest of my life was only 24 months away and who the heck knows how to get there….

Then there is the typical double agent-ness.  Although its been a really good year in terms of my life as a patient. Its a calm before a familiar storm.  The steroid shot is buying me time.  How long is yet to be determined but if I have another winter like this past one I don’t think I will want to go through a third.  So despite the fact I haven’t taken the green machine to work in two weeks, I know I am simply riding a false high that will eventually bottom out most likely sometime like the middle of PICU or worse my first month as a Sr in the ED and force me to come to grips with despite two years of magic I still have a chronic illness and I am facing another life altering 6 months of a massive surgery that will most likely per usual live me with a hgb of 7.5 followed by mild hysteria over how can I work 7 days a week and go to PT 5 days a week and keep my health insurance….so that I can pay for the monstrosity and live to tell about it.  Its most likely going to happen before I graduate.    I may be the doctor now but that does not give me a immunity. I also cant help but occasionally despite how different here is than back home in terms of patient/family care….chiming in with the other half of my life on rounds….and finding everyone staring at me like I have three heads when I suggest we introduce two of our patients close in age and with the same type of cancer…. FOr the love….we can get their parents’ premission first…I am not crazy I just happen to have be a agent from the light side (for we all know that the doctors are part of the DARK SIDE )…on second thought I will go back to updating discharge summaries….ignore me I just work here…

SOAPBOX

President Obama’s budget as it stands will substantially slash pediatric graduate medical education (PEDIATRIC RESIDENCIES) and funding for all of our nation’s childrens hospitals on Sept 30. The current plan would force many smaller pediatric training programs particularly the primary care based programs to have to close their doors to new residents. Larger programs would have cut their numbers and cut out benefits and educational funding for research and care for the underserved. It also cuts crucial funding to all childrens hospitals many of whom (like mine) give care to children who otherwise would have limited access to care. Ironically we desperately need more pediatricians in the US, particularly primary care doctors yet this plan would make it nearly impossible for us to expand our numbers and would in fact CUT THE numbers of pediatricians that graduate every year!

My patients don’t have a buck and they don’t have a vote, they can’t buy their own health insurance/health savings account/or even barter a chicken in exchange for their care. So no matter your opinion or political affiliation, stand up for your children and grandchildren (Not to mention all my people who always get the shaft any way (all the gimptastic, disabled kids who need health care so they can grow up and become politically incorrect pediatricians if they want)).They are the future voters, physicians, teachers, politicians and citizens of this country. They are also the patients whom if we don’t provide care for now will be the future citizens on disability, medicaid and welfare.

Please help me support children! Please help me by clicking on the link through the National Association of Childrens Hospitals and sending a letter through their program to your representative. (it will link you to the right people in your area through the link and it took me exactly 125 seconds) (or if you have more free time than me and feel inclined write your own letter). Make sure to note your local Children’s Hospital or a Hospital that has made a difference in your life or the life of your child or grandchildren!!!!!!!

HELP KIDS!

Love,

Amy

(just another American voter who just works 90 hours a week to takes care of other people’s babies who apparently are just not that important)

Transition Epic Fail

So the hip is going and I need a steroid shot. Ideally I would like to go to Baltimore and have my surgeon see me and do it. It takes about two minutes and it works for three months. He wipes the site with a etoh pad, shoots a fluro image, shoots me up and then puts a band-aid on.  Painless, effective and totally worth it.

But I was a good girl.  I made inquires and I found a surgeon right here in town who not only has experience with the injections but has experience with transition cases due to some special interests in perthes etc.   So I move around my life and manage to get an appt yesterday fully prepared to get the shot and be back before my clinic started.  He walks in, comments ” Your left hip looks fine (because a  hip replacement at 25 is totally fine). Your right hip has some deformity and arthritis (YOU THINK?) and yes I can do the shot.”

…in the OR (which means I get to pay for the OR TIME)

……at 7 AM (heart of rounds)

……..and you need a physical (another hour of missed work and ITS A SHOT I am not getting sedated and I AM 26 years old and other than ortho issues I have never been sick a day in my life…I never even had so much as a pneumonia)

………..and you have to come see me “post-op” (and yet another hour of my life)

:::Look of disbelief:::

“I don’t know how your doctor did it but thats howe we do it, its cleaner, more space for the fluro arm. “

(Cleaner…for the love its a shot like a vaccination…lets not make this melodramatic  and SPACE FOR THE FLURO ARM…we have them in the tiny little ORs in Kenya, ok you don’t need much space)

I tried to plead as a resident for a better time….no one seemed to care.  I tried to plead as a 26 yo to waive the physical requirement…he says anesthesia is who makes that call (BUT I AM NOT GETTING ANY BECAUSE ITS just a shot).

it was an epic fail. Failure to understand where I was coming from, failure to understand that the purpose of this procedure is not to relieve my pain ultimately but MAKE ME MORE FUNCTIONAL AND MISS LESS WORK.  Failure to understand that maybe OR time + three doctor appointments would max out my insurance’s patience and put a hardship on my little post-grad budget.

so in the end I am settling for pain patches and an appt prior to flying out to Kenya in Baltimore with a surgeon I trust who will not charge me up to a 1000 dollars for a shot that if I had a fluro arm I could do myself.

heck maybe I can just sneak down into the fluro room at work….at 3 AM no one would notice.

just kidding.