Perches in the Soul

Archive for the ‘Patient-ness’ Category

Joy in the Morning

Published by Amy under Disability Stuff,Family,Jesus,Medical School,My Mom,Patient-ness,Residency,Romania,The Future on December 1, 2011

Three years ago when I was in the mist of my third year of medical school. I went through a 2 month period where I rarely slept more than a few hours at a time. It wasn’t the call schedule, it wasn’t the stress of residency applications or Step 2, it wasnt even entirely the pain that gnawed my left side at times to the point of tears. It was the creeping waves of anxiety of a young doctor to be who knew exactly what was happening to her in exquisite detail. In my minds eye I could see the holes in the cartilage, in which glistening white bone lay naked and scraped. The dying cartilage and wounded bone making something akin to broken glass in a small tight dark space lacking adequate blood supply for even the chance of healing despite my immune system attempts, in the end the immune responders led to an army of inflammation and pain.  I dreamed about this.  Then I would dream of the OR a place that as a med student I always felt like an escaped patient masquerading as a young student doctor to be. I had a recurrent dream that I was found out, carried down the hall, stripped of my scrubs and then rolled back to the OR screaming that I was just not ready but no one heard me.

Here I was excelling in medical school, living my dream, planning my first trip to Africa and having no idea if I would be physically able to continue in a few months, years. I finally found the courage to get x-rays, a kind rheumatology fellow who I frankly owe my sanity to paged me and went over the films with me gently. He talked me into a steroid shot in which a the radiologist furthered my anxiety with talk of strange anatomy and bone density.  I made an appointment with the hip surgeon who I had met several years earlier and wrung my hands as I studied for Step 2, started my residency essays. The visit upset me even though I knew what was coming and gave me the strange transition of me explaining to my anxious mother what the doctors were saying. He gave me another steroid shot that was amazingly effective and I lived with denial for a summer, went to Romania and pretended that everything was ok. Perfected my residency essay, then my peds AI hit me like a freight train and my denial started to crumble.  My first patient died of pneumonia related to muscular dystrophy in an all night vigil of wailing parents and I was reminded of my sweet Romanian friend whose similar death had rocked my world in college.  Our parallel diseases differed in two major ways, there was a palliative yet potentially close to curative treatment for the symptoms of mine and even when I had no cartilage left…I wouldn’t die.  Visions of a beloved elderly patient with RA who had movement in her hands, was going blind and couldn’t get out of bed flashed through my brain…could I live with that reality?  Visions of the synthetic hip failing because of my bone density and knowing that once we took my femoral head they was no going back, if the prosthesis failed, I wouldn’t walk again.  After the on call vigil, I drove home to the mountains then onward to get a steroid shot.

Within in weeks, I could no longer deny it, the shot failed. I wasn’t sleeping now because of the pain.  It was everything I could do to keep the facade that I was just another medical student. I called my surgeon’s PA and cried in the child psych copy room and told her I wanted to do the surgery now.  (yes I had a nervous break down on the pysch floor…fun yes). Things fell into place, the surgeon fit me in (I am sure he was shaking his head thinking finally I was ready a year ago, this girl is nuts).  I passed Step 2, got my first residency interview and with tachycardia to the 120s, lectured my anesthesiologist on the decreased number of DVTs with spinals opposed to general as they rolled me into the OR.

I was a neurotic post-operative patient but I went back to medical school three weeks later, line danced at 5 weeks, interviewed for residency at 6 weeks, Kenya at 16 weeks  and by the time match day came I was taking the steps two at a time for the first time in my life.

I went through a similar period of denial and anxiety although much milder, fought to get steroid shots in Cincy( Part II, Part III). Epic fail, telling my  chief resident was near to the copy room incident. This time the PA tried to comfort me that even though there was a boat load of hardware in the hip, they would figure it out and I would be ok. I nearly lost my insurance coverage, took the Step 3 and then spoke in DC the week before.  By the time I got to the OR I found myself in a much better place than the previous time, believing that somehow the hip would work despite the hardware weakened bone and that I would walk out of this better than ever.  I found myself telling everyone (yay versed) my bucket list of things I wanted to do with two shiny hips (I remember this prior to heavier sedation but apparently I kept right on going although I don’t remember it). I woke up to the news that miracles of miracles the hardware had not prevented them from using the best kind of hip as expected and I had a 30 year lease at minimal. I was texting everyone I knew in the PACU and thanking everyone from the jainator to God for my incredible good fortune.  My family and I survived me with five weeks of unplanned toe touch weight bearing while the hardware holes healed despite a funeral, a mild incision infection and general angst on the part of a sibling.

And I find myself at 5 weeks post op sitting in an exam room across the hall from where this all began three years ago with the visit (see above). The PA comes in and asks me when I am going back to Africa?  She hands me the films with a grin. There they are, healing perfectly. Her optimism is infectious and suddenly as I remember how fragile it all seemed three years ago.I think back though to my first pediatric death and of my sweet friend Laura who died of a similar diseases (dying muscles and connective tissue…I have dying cartilage and connective tissue) and how in some strange way of the disability tribe I feel I owe them, they expect me not to waste this, to live with reckless abandon.

I am overcome by gratitude this time sans versed.  Nearly in tears.  The attending comes in  says my name, kisses my cheek and says “You’re Done!”  He grabs his cell and proceeds to call my pediatric ortho to tell him the good news. (yay for transition..although it was kind of a weird move)  He draws me my “life plan”  which includes one more visit at 6 months, then no more visits for 2 years.   It doesn’t seem real. No more hip pain, no more hip precautions, an inch taller (much to my sister’s dismay) I can throw away my crutches, 6 weeks of PT and then welcome to the rest of my life.

Mom and I drive back down the familiar spine of our beloved mountains, a little giddy despite the recent family sorrow, amazed at marvels of modern medicine, of grace and of the incredible joy of sweet relief and the sweet ability to dream.

Praise God.

 

Me and My poor quality of life are going upstairs….

Published by Amy under Disability Stuff,Patient-ness,Random,Residency on September 7, 2011

I have been in 7-8/10 right hip pain post-call for about a month and half.

Yesterday was Grand Rounds and I was post call. It was on chronic pain in connective tissue disorders….NO REALLY it was.  I slumped in the back, ate my oatmeal and hoped that sleep would overtake me quickly. It was all fun and games while the geneticist gave an explanation of connective tissue disorders. Then the rheumatologist went on about Fibromyalgia and JIA.  I drifted in and out. Then the psychologist got up to talk and went on about chronic pain and patients (our) poor quality of life.  And how much they (we) feel persecuted in the hospital when they come seeking meds and how they pass up activites they would otherwise enjoy and then how there is a higher rate of suicide. They went on to talk about new research studies that were ongoing looking at day hospital treatment for chronic pain. and cognitive therapy.

I sat there in the corner in my imaginary white coat (I never wear one, it scares kids) and shook my sleepy head at this. Its all fun and games until someone misses the point.  Maybe part of why we have a higher rate of suicide and “poor quality of life “is not so much our pain but the medicine we use to treat it. And medicine in the literal and larger sense.

What if instead of taking our chronic pain patients out of society and out of school to be in a day hospital program, we find ways to help them engage in life? What if instead of giving narcotics like candy to our sickle cell population, we tired alternate methods or we at least stop complaining about how they are addicts because WE (the doctors WE) gave them their addiction!! What if we stop trying to make pain less depressing and find ways to make life more worth living? What is our goal, be pain free, or be living our lives?

I agree grand rounds friends, chronic pain is a mind game.

But its some what clear to me that you have never played.

Chronic pain is a series of choices.  Difficult choices. Defining choices but choices never the less.  Every day you wake up and you decide what rules today?  My life or my pain?  Do I fit my pain around my life or fit my life around my pain?  You can tiptoe around on eggshells and slip and fall or you can run and not look back.  You don’t choose to live with pain but you do choose to live to the fullest. TO live with joy. To live with gratitude.

Doctors, all the study show we are actually quite bad at understanding what “quality of life” means to our patients so maybe we should listen to them.

I rolled my eyes and my wheels and took my poor quality of life upstairs to rounds and helped save some lives. Then I went home, had a mug of tea, a long bath and a nap. I woke up and read a book, went to bible study, came home and finished the book.

Like I said me and my poor quality of life…..

 

Given Much

Published by Amy under Disability Stuff,Jesus,Missions,Patient-ness on August 17, 2011

My mentor gave Grand Rounds on Global Health yesterday.  I was post-call and in pain but I stayed the extra hour, set in the middle of the intimidating auditorium. I found myself nodding and smiling even after one of he worst two week periods of my professional life. About half way through, he quoted the bible. Most ears would not have heard it but I heard it.

“To whom much is given, much is required.”

90% of the world’s children live in the developing world and a huge chunk of them have limited access to care. In the world of endless ventilators and children who are trached and have permanent feeding tubes where I live it is easy to forget that most children are lucky if they can get IV fluids.

We have so much.  And much, much is required.

As I stare in the face SHINY HIP number two a procedure that costs 50,000 Kenyan Shillings and probably at least 30,000 to 40,000 US dollars.  I am so grateful. So grateful. That I don’t have to go beg my relatives to come up with the money or choose between eating and my medicine.  I am so grateful for my magical insurance card that several precious friends here in the States do not have. Not to mention for the divine provision that the best surgeon in the US is at my finger tips in network, four hours from my parents’ home.

I have been given so much.  And much, much is required.

I am disappointed about canceling my trip to Zambia in Jan, a casualty of the scheduling changes that took place to make way for the shiny hip. But I am so grateful. So grateful that I have been given a way out of the constant pain and the progressive disability so that I can be healthy enough to move to Africa full time a year and half post-op.

So much given and I am ready to do what is required.

I can’t save his heart but I can save his soul

Published by Amy under Children,Patient-ness,Residency on August 8, 2011

Former 25 wk premies

bad lungs.

bad gut.

bad heart.

on a ventilator.

cant eat.

…can’t fix the heart. (inoperable)

The heart will be the end of him.

I got a page asking for restraints.

I go and see him

He is waving his little arms and legs.

Looking at the world.

They tell me they are afraid of toys.

Because it might overstimulate him.

Overstimulate his fragile broken heart.

I find a rattle half buried under blankets.

His eyes light up and his hands reach out.

His heart rate is steady,

his breathing is smooth and unlaboured.

He smiles.

I say to heck with his heart.

which I can’t save.

No I won’t restrain him.

Play with him. I tell them.

I cannot save his heart.

But I can save his baby soul.

A soul that just wants to learn

and play

and love

and be.

 

Respiratory Distress

Published by Amy under Patient-ness,Residency on August 8, 2011

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.

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