A Mixed Bag of Medical Results

Standard

Part of my personal myth is that I was a “miracle baby,” spared from a very early demise by the medical intervention of nurses and physicians, including my uncle Elam, a pediatrician, who hand pumped air into my lungs while being transported to Geisinger Medical Center.  

I had been born premature, suffered from a condition called Hyaline Membrane Disease due to my underdeveloped lungs, suffered a collapsed lung due to my hard breathing, and likely would have died without the advanced care that I received.  I was a fighter, for sure, but my survival would depend on the skilled intervention of medical professionals.

My mother would tell me that story and also use it to remind me that God had a special purpose for my life.  But what she didn’t tell me, until much later, is that my early trauma was actually caused by her doctor who induced labor. 

Oopsies.

My Medical Family

My mother had aspired to be a nurse.  Even worked in a nursing home prior to marrying my dad.  But life, including my sister and your’s truly, changed her plans. 

However, as often is the case, these dreams of parents are sometimes fulfilled by the next generation and sometimes double.  Both of my sisters are employed in the medical field and eventually even my mom found her way into a doctor’s office before eventually playing an instrumental role in the opening of Compassion Parochial Clinic.

My own role in all of this was to be my eldest sister Olivia’s first patient.  Using her Fisher Price Medical Bag, she would check and treat my various imaginary ailments, and had her mind set on being a pediatrician like her well-respected uncle.  And, after graduating high school, then acquiring a biology degree, she continued her education at Albert Einstein College of Medicine on Bronx, NY.

In fact, l feel that I may deserve a partial credit for having attended a lecture on the heart.  Although, I may have missed the second half due to a terrible bout of drowsiness and was not the only one sleeping.  Although, as a courtesy, I will not say whether or not my sister had succumbed.

Anyhow, my younger sister Lilian also picked a medical career, eventually became an RN, continued her education, and is now working on her licensing as a midwife.  Her passion is welcoming babies into the world and is someone with a personality well suited for the job.

All of that to say that this exposure causes me to have deep respect those in this profession.  One way to get on my bad list very quickly is to suggest that those in the medical field are only in it for the money and would deliberately keep people sick to cash in.  Sure, there are bad eggs in every profession, some terrible doctors, but my sisters (like many of their colleagues) are there to help people get well.

That said, having family in medicine also removes some of the aura.  My sisters are far more qualified to give opinions on medical issues than I am and yet they also are still human. 

Doctors make mistakes, they’re fallible like the rest of us, with blindspots and bias.  Plus they’re used to having totally ignorant people, who “did their own research,” challenge them on things they’ve spent years of their life studying, and can become tired of answering these inane statements—appear arrogant.

Physician: “Heal Thyself…”

People have very high expectations in regards to modern medicine.  We’re supposed to go to the doctor and be completely healed. 

But the reality is quite different from that.  Once you get past the buzzing technology and laboratory developed chemical cures, the sterile well lit halls of institutions, our actual abilities are still quite primitive.  Science may have given us better bandaid solutions than were available to our ancestors, yet there really aren’t that many miracles to be had.

My own expectations have lowered considerably after two injuries requiring expert examinations.  

The first, diagnosed as Degenerative Disc Disease, brought me to the office of the renowned neurosurgeon, Dr. Rajjoub.  I had terrible pain, loss of strength and feeling on my right side, my neck was really bad from what my family doctor saw on the MRI.  My parents, after we waited what seemed hours, finally were escorted into the examination room and were full of anticipation.

Having done our own research, knowing the seriousness of my injury, it was quite certain that I would be under the knife soon.  They would open things up, remove the bad, and fix me up better than new!  

The physician strode into the room.  He looked over the charts and images with intensity and then, without hesitation, “physical therapy” and started to turn towards the door.  Stunned, my mom, speaking for the three of us, our mouths agape, “Wait, what?!?”  It was as if he just told a blind man to rub mud in his eyes and was simply going to leave.  He explained further, telling us about the risks of the procedures, how my neck movement would be limited after, and restated his recommendation.

Dr. Rajjoub was right.  After weeks of therapy and further exercise at home, I was able to regain feeling and the use of my right arm.  Sure, I occasionally have painful flare ups and may need the surgery some day, but the doctor had given me the right answer even if it was not the one that I wanted to hear at the time.  Modern medicine has advanced, yet it is our body that still does most of the healing.

A Comical Contradiction

After tearing my ACL I met with an orthopedic surgeon to discuss the options available.  Still active, I expressed my desire to get back in the game and he responded by recommending surgery.  They grafted a part of my hamstring tendon in where the ACL had been and I spent the next few months becoming good friends with Rob and Bob at Keystone Care Physical Therapy and impressing the old folks there with my vertical leap.

Unfortunately, after a year of intense rehab, I was playing basketball and reinjured the repaired knee.  So I went back to the orthopedic surgeon for a consultation and his advice?  He suggested that maybe I slow down a bit, that I was no spring chicken anymore (a paraphrase) and should probably avoid strenuous activities.  Excuse me?!?  I had thought I went through the surgery and physical therapy so that I could actually use the limb, right???

But that’s typical of a doctor’s advice.  He was trying to minimize the risk of my reinjuring my knee, to cover his own butt, and could I really expect him to say anything otherwise?  To tell me to go full throttle again?  I can understand why he would urge my caution.  And still I can’t deny being disappointed.  My thought had been that this surgery would allow me to pick up where I had left off and instead I got a cease and desist notice.

The Undiagnosed Nightmare

I’ve reconnected with an old school friend.  I rode the bus with him for many years and we shared a first name. 

It is quite astounding, actually, how we got reconnected.  That being a story for another time.  But one thing memorable about this old classmate is how he was always complaining about pain in his feet.  At a younger age I had thought of him as being weak or a whiner.  He had been diagnosed as being flat-footed.  

However, it was a little clearer that there was something more seriously wrong when, in middle school, a fall, after a playful shove in the hall, resulted in a broken hip.

Anyhow, at our one-on-one reunion he would let me in on his the true source of his suffering and something that the medical professionals had missed.  Something that doctors had initially told him was all in his head, that the genetic department of an area research hospital refused to even test,  turned out to be Fabry’s Disease, a rare genetic disorder where the body is unable to produce a particular enzyme, which means the body is unable digest certain proteins, and is a death sentence if not properly treated.

He had gone through hell.  A breeze on his skin felt like torture.  They had treated him with addictive painkillers that basically turned him into a junkie.  And his proper diagnosis came from an uncle who read a story about someone with similar symptoms, a revelation that prompted my friend to demand the diagnostic tests for the genetic disorder and only then did he finally receive the necessary treatment.  The medical system had both failed and saved him.

The Miracle Hoped For…

Then there’s my cousin Uriah.  Nothing, not the most advanced treatment in the world, could save him.  The prognosis was never good, Synovial Sarcoma, but I held on to the hope that some new cure might come along, some miracle might happen, and he would survive.

It was hard to watch.  First after one round of him taking poison, called chemotherapy and the only thing that will keep the corrupted human cells called cancer from growing, they decided that he would need to sacrifice his leg.  This Uriah and his family did everything they could, he received top notch medical care at Walter Reed and elsewhere.  But there was not much that could be done for him.

The limitations of modern medicine is a bitter pill.  And those seeking ‘alternatives’ do not fare any better if diagnosed with an aggressive form of cancer.  I know many strong-willed individuals, in partial denial of the graveness of their condition, who traveled to places like Mexico for some kind of breakthrough treatment and suffered the same fate.  Better technology may come along soon and yet disease and death is as natural as health and life.

There is a myth, popular in some circles, that if a person eats right and exercises they will be rewarded with long life.  Uriah was one of the most fit and disciplined people I know, there was nothing he could have done better, he was dealt a bad card.

Having Correct Expectations

We see the headlines, “The third-leading cause of death most doctors don’t want you to know about,” discussing medical mistakes, like this one:

“In 2002 James lost his 19-year-old son after he collapsed while running. He had been diagnosed with a heart arrhythmia by a cardiologist a few weeks prior and was released from the hospital with instructions not to drive for 24 hours.

“His death certificate said he died of a heart arrhythmia,” he said, but my son really died as a result of “uninformed, careless, and unethical care by cardiologists.” He explained: “If you have a patient with heart arrhythmias of a certain level and low potassium, you need to replace the potassium, and they did not. And they didn’t tell him he shouldn’t go back to running.” Communication errors, he said, are “unfortunately very common.”

What is left out of this story is that a century ago he would have simply died from the arrhythmia. 

In fact, only half a century ago my great-grandfather died, a middle-aged man, of a heart attack because there were no surgeries widely available. 

So, truly, modern medicine is a victim of it’s own success, things have improved so much from the time when many people died of many diseases, even at a young age, that we now expect perfection.  Our ancestors, not too long ago, would have no treatment options, whereas we demand answers when the treatment fails.

Those who expect too much will be the most sorely disappointed.  Those who expect to be saved from suffering by science will some day be faced with a harsh reality and, likewise, those who believe that there’s a cure for cancer being withheld are equally delusional.  This idea that we have complete control, that there should somehow be a cure for everything, is a product of our success in medicine and also ignorance of what this success actually means.  

Sure, some of us, like my grandpa, may have died on multiple occasions had it not been for medical advancements like Penicillin, prostrate surgery and pacemakers.  But, even now, with the great progress we’ve made, we’re still all eventually going to wear out.  Our bodies have a shelf life and all the intervention in the world isn’t going to do much to change that.  Eat healthy, exercise enough, avoid getting hit by a truck, and you might see eighty years, maybe more if you have good genetics.  But we won’t live forever.

So, before we become too critical, rather than only dwell on the failures, we should look at the advancement and appreciate the success.  Results will always be a mixed bag, even those who have received the very best care, men like Steve Jobs, do not live forever nor will you.  Even Lazarus, brought back to life by Jesus, eventually died.  And my friend, the one with the missed diagnosis, would long ago have joined Lazarus had it not been for modern medicine.

When Love Remains — A Guest Blog By Linda Stoltzfus

Standard

This is my first guest post.  It is written by my mom (a person who encouraged my writing) and resonated deeply with me.  It is something my mother shared recently about her own mother’s decline in health and I asked permission to share here.  I felt it was something relevant and worthwhile for those who have faced or are facing similar circumstances.  A story about memory loss and love…

Sitting on the couch my mom reaches for her phone. She snaps it open and stares at the face that greets her. The man who has been at her side for over sixty years stares back.  Her fingers haltingly push the button that calls him.  It rings and I hear his voice answering.

She pauses; words no longer come easily for her.  But I know what she will say.  She will ask him to come back into the house.

As I reach for the phone I reassure her that Dad has just gone out for a walk and he will be back in time for supper.  She seems to understand, but I know that as soon as I leave the room she will be trying to call him again.  Her mind can no longer retain anything that was said a minute or two ago.  She wants her husband, my dad, to be by her side night and day.  He has become her memory and her security in this foggy world of hers.

My mother has been given the diagnosis of dementia likely caused by Alzheimer’s.  At the age of eighty this isn’t really that unusual.  According to the Alzheimer’s Association, one in nine people over 65 has Alzheimer’s disease.  One of three senior citizens will die with Alzheimer’s or another type of dementia.

My Mom has beautiful eyes: big, bright and blue.  She had lovely long hair which never turned gray and kept its blonde streaks into her seventies.  She would faithfully wash it once a week, often using whipped egg whites as conditioner.  It was her pride and glory.  When she was diagnosed with Non-Hodgins Lymphoma, I believe the most severe blow was that treatment would cause her to lose her hair.  But to live she had no choice.  The cancer was stage four and her swollen lymph nodes were giving her a lot of pain.

Except for her hair loss, she tolerated the heavy duty cocktail of chemo drugs rather well.  It was with much relief that after her last treatment she was pronounced cancer free.  However, she seemed to becoming more and more confused.  Her once sharp memory wasn’t there and she constantly wanted pain pills for some ache somewhere.

Instead of getting her strength back she wanted to do nothing but curl up on the couch. She began refusing to shower, or even comb the hair which had begun to grow back.  Having to leave the house and attend any activity with people made her extremely anxious.  My dad desperately held on to the hope that she was still recovering from the cancer.  He insisted that once her strength came back things would get better.  But after cognitive memory testing by the doctor, it became obvious that she was showing signs of dementia.

I was aware of symptoms of dementia and saw the effects it had on my grandmother and the toil it took on my aunt as her caretaker, but they lived several hours away and our contact was minimal.  The reality is much harder when you deal with it day to day.

Dementia is often misunderstood as being something all old people have; however it is actually a part of different diseases.  Alzheimer’s is the one that often comes first to mind but mini strokes, vascular issues, Lewy’s disease, Parkinson’s and even brain trauma can lead to the diagnosis of dementia.   My mother has been diagnosed with Parkinson’s but the doctors seem to think the cause of her dementia is Alzheimer’s.

Today when I look into my mother’s eyes they look back at me empty of emotion.  Occasionally she surprises us with a smile, and for a brief moment I see them light up.  But most of the time, they remain dead to her surroundings.  Her face seems fixed into some sort of mask of confusion.  During her calm times her eyes stare blankly into the distance.  When agitated she has the look of a distressed child.

It is now supper time and my mother makes her slow trek to the kitchen gripping her walker for support.  I pull out her chair and she sits down.  I hand her some napkins which she seems to enjoy folding. It is one of the few things she still can do.

My dad comes into the house, and with his usual style, asks Mom how she is feeling.  Although he hasn’t had a positive answer from her concerning her health for months, he seems to retain some sort of illusive idea that it may yet happen.

He deeply misses his soulmate.  They were unusual by today’s standards.  There was no independence in their relationship: they did everything together and it seemed to work for them.  Dad enjoyed driving and Mom did the navigating.  Dad liked watching people while Mom did the grocery shopping.  They both enjoyed going out for fast food, Burger King was a favorite, and they preferred eating in the car together rather than inside.

Mom always made sure Dad had three meals a day and that his needs were well taken care of.  However, that all changed with her cancer diagnosis.  She hasn’t cooked since.  Today we all take turns making sure they have a cooked meal each day.

At the supper table, I try to bring back some sort of connection by talking about my birth fifty some years ago. Mom is still able to recall my date of birth but she isn’t sure how old she is or even what day or year it is.

One of the frustrating things about dementia is the way it plays with your emotions.  One minute the person can be reciting a date or event in perfect order but then a moment later have no idea who they just talked to or what was said.  A person with dementia has good and bad days just as any normal person does.  This puts caretakers on an emotional seesaw, since the good days make you want to believe that the person is getting better.

The first thing that comes to mind when you hear the word dementia is loss of memory.  Of course this is true but we all experience some loss of memories throughout the years.  The disease or injury that causes dementia is much more complicated than simply forgetting something.  It takes many cranial connections to make a decision, to recall how to turn on a stove, know the steps in taking a shower.  Once this processing is damaged, or gone, a person becomes more and more limited.  They need someone to give them step by step directions for each and every process of the day.

Today is one of Mom’s good days.  She seems relaxed, when several of her younger grandchildren show up, she smiles.  Instead of lying on her couch she remains sitting watching the activity.   She motions to me.  I can see that she wants to say something but her voice is subdued, and hard to hear.  I move next to her.

“Do we have any smarties?” she asks me.  It is her favorite treat for the children.

I check the dish she keeps next to her bedside.  It has several pieces and I give her the dish.  Her face lights up as she hands them to the children, and for a short time I see my mom back.

My mom’s biggest goal in life was to take care of her husband and family. She faithfully raised seven children and celebrated the birth of each 30 grandchildren and 20 some great-grandchildren.

My mom enjoyed listening to music, reading and going to church and social activities.  Now she no longer wants to attend any type of social activity and refuses to have any music playing around her.  She can’t focus to read.  Although still able to read the words the comprehension is no longer there.  She has always been a follower of Christ with strong convictions but now no longer prays before a meal unless my Dad reminds her.

One of the cruelest things of dementia is the loss of the personality of the person you love. The disease has robbed her and us of some of the most precious parts of the human relationship.

In exception of one thing:  unending love. My mom is surrounded by agape love.  For sixty years my dad has been with her and is committed to being there until the end.  Although he has taken on the role of caretaker, his love for her remains the same.

Each of her four daughters is involved in her care, making sure her daily needs are being met.  Her daughters in laws have faithfully been making meals for several years with even some of her grandchildren helping out.  We all play different roles motivated by love.

One evening as I sat next to my mom who was lying on the couch with her eyes closed, seemingly sleeping, she reached out her hand and put it in mine.  She then took her other hand and laid it on top.  A wave of warmth spread over me. I haven’t felt that kind of emotional connection from her in a long time.

In that simple gesture, I knew that in spite of her confused state Mom was feeling loved.  In return she was offering the one thing she could still give back: affirmation of her love.  No disease can ever take that away.