chair-leader

[chair-leader]

Covid-19 Came to Town

The Covid-19 virus came to town.

I wear a mask, faithfully wash my hands, sanitize everything within my reach, and go out only when necessary.  And to be honest, the Covid-19 crisis is not my biggest fear.  

My underlying, overwhelming, and biggest fear is a loved one being in a hospital without someone at their side and making sure their needs are being met.  And, now that anyone staying in a hospital is unable to have help with them, I am filled with anxiety.  

I believe I spent more than 3,000 hours sitting next to my husband who was laying in hospital bed as he waited for a heart transplant.  Being his advocate was my critical job on his medical journey.  I helped him when I could, took notes, asked questions, watched carefully, and offered comfort and care whenever necessary.  I knew from very early on – it was imperative that I be next to him.  My late husband would often quip the hospital help call button was wall art.  He was convinced ‘it had form but no function.’ He thanked me frequently for being his eyes, ears, legs, and caregiver when he was in the hospital.  When kids and career prevented me from being with him, I feared that his basic needs were not being met in the same manner as when I was there.  

As Covid-19 has unfolded, and hospitals became more rigid with visitation rules, I put off my annual health screenings.  What if something would be wrong with me?  I know I would not seek additional medical attention at this time.  I encouraged my kids to drive slower.  And, I pray that no one I know would need emergency medical attention.  Then, it happened.  My sister was called for surgery on the first day that hospitals started doing elective surgeries again.  ‘You will be fine,’ we all told her.  In reality, our entire family was scared to death.  You are sending a loved one in for surgery and afterwards they wake to complete strangers.  

After my sister was released from the hospital, she cried or remained weepy for several days.  She recounted the horror of being alone in a hospital.  Prior to surgery, a blood draw was done.  The individual doing the draw could not find the needle.  They looked around for a bit and said, ‘Oh well, it will show up.’  ‘Could it be in my bed?’ my sister worried. She recalled waking up from surgery and no one being able to answer her as to how the surgery went as ‘they had not seen the report.’  She talked about a drain hanging from her neck that two nurses were going to pin to her gown.  They never returned.  She needed pain medication and hit the call button.  After much time passed, a technician came in.  My sister mentioned that maybe her call button was not working. The tech replied, ‘No.  I saw your light on in the hallway.’  It was midnight when my sister requested pain medication from that technician.  ‘I will let your nurse know,’ the tech replied. For three hours my sister laid in excruciating pain waiting for relief.   At 2:40 am, the nurse arrived with pain medication.  ‘I forgot to head your way and get this to you,’ she said. My sister recounted the call button falling from her bed.  She needed help.  Within hours after having surgery, she undid her leg compression device, scooted out of bed, and she cried as she crawled on the floor with the surgery drain still hanging from her neck, hoping to find the button.  Then, she worried that she did not put the compression device back on correctly.  ‘Could that cause a blood clot?’ she feared.  She could hear others on the floor crying or calling for help.  She heard nurses talking and laughing.  Her heart ached with sadness and fear.  ‘Is this how we treat people?’ she pondered.

When it came time to be released, she received mixed messages.  Person one: ‘You should be able to go after blood work at 7:30.’ Person two: ‘You should be able to go at 11 or 12.’  My sister explained that she lives 30 minutes away and would need to let her husband know. Around 8:30, transport showed up to take her to the lobby.  She sat in the lobby for more than 30 minutes waiting for her husband to arrive.  As my sister cried telling me her hospital story, she caught her breath and said, ‘I received better care picking up our Easter dinner at Texas Roundhouse.  They were more helpful, organized, and accommodating.’  While I laughed hysterically at the analogy, I completely understood the reality of her comment.

I know more and more Facebook, chat groups and blogs are popping up recounting the horrors of loved ones’ needs not being met who are alone in hospitals, retirements homes, and extended care facilities during this Covid-19 crisis.    

Hospitals are starting to lay employees off by the thousands.  Their business has dwindled.  They believe patients continue to hold off on elective surgeries as families ‘fear the virus.’  The virus may not be the fear and the crisis may not be Covid-19.  The fear and the crisis may be the way people are treated when alone in care facilities.    

Hospitals continue to lock patients in and lock loved ones out.  I continue to wear a mask, faithfully wash my hands, sanitize everything within reach, go out only when necessary, and pray daily that no one I love will enter a hospital without a loved one standing by their side.  

My biggest fear is real and realized by millions in care facilities each day, even before the virus came to town.  

 By Terri McEachern

[chair-leader]

The Tale of Two Deaths

Next blog topic - The Tale of Two Deaths

My husband died at Barnes Hospital following a stroke.  A short time later...

My dad died at Mercy Hospital following a stroke.

The cause of death - the same.  The process of my loved ones’ final days on this earth - very different.

More coming soon...

[chair-leader]

Zac

In my ‘day job,’ I have the opportunity to work with so many high school and college students.  I truly enjoy seeing their futures unfold as they select a college and a major.

I have known ‘Zac’ for six years.  I watched him graduate from high school, select a college, and now a major.  Zac is in pre-med.  More than anything, he wants to be a doctor.  Zac will be a great doctor.  He is kind, compassionate, and very bright.

I am sure I drive Zac crazy.  I feel like I have so much to say to him about my journey over the past five years as my husband has waited for a heart transplant. My experience comes as the person next to the patient in the bed at a hospital.  I give Zac ‘advice’ each time I see him.  They are small things that I believe can truly can make a HUGE difference to a patient.

Zac...’Don’t walk backwards out the door as the patient and family are still asking you questions.’  He smiles and says, ‘got it.’

Why just tell Zac?  Maybe I could blog about the past five years and reach a few more people than just Zac.  And so, my blog begins...

[chair-leader]

Why Blog?  Why Now?

People have asked why I decided to blog about the experiences I have had over the past five years.  The answer is complicated.

Why now?  It has been six months since my husband’s heart transplant.  I finally feel like our life is getting back to ‘normal.’  We have not had normal for so many years.  In December 2014, my husband had an LVAD implanted.  (Left Ventricular Assist Device)  The LVAD is an extraordinary invention and medical device.  For my husband, it saved his life.   Many consider the LVAD a ‘bridge to transplant.’  That is exactly what it was for us.  It kept him alive while we waited for a transplant.  Having said that, the LVAD was stressful.  You are literally living with someone who is being kept alive by a battery operated device.  Each time you leave the house, you must make sure you have enough battery back up.  Each evening, you plug your spouse into a wall.  What if the batteries fail?  What if the power goes out?  We were well trained with the LVAD - well, as well trained as two non-medical people can be.  And, believe me, we read every article, blog, Facebook post, etc... that we could about the LVAD. We are readers and ‘Google That’ people by nature.  We felt well informed. But as two ‘Type A’ worriers, we felt the weight and the seriousness of the LVAD every single day.  (My husband and I are both Type A people. Maybe that worked against us on this journey?  Maybe that helped?  We read what we could.  We followed directions.  That is our nature.)

So now, with some distance behind us since the heart transplant, I feel like my perspective is better.  I now feel like I can look back and objectively comment on the journey.  I learned so much.  I truly hope I can help the next person who is just starting down this path.  Again, I am not a medical person.  What I post is my opinion from my experience.  I was just a wife, mom, daughter, sister, friend...living a happy, carefree life...when darn, the unexpected happened!

[chair-leader]

CHAIR-leader

I call myself the ‘CHAIR-leader.’  

I was my husband’s cheerleader for the past five years...well, actually for the past 25+ years...but, the past five have required so much more attention!

I was in the CHAIR next to the hospital bed.  I estimate that I have spent 3,000 hours in hospital and/or surgery waiting rooms over the past five years...it could be more.  It could be less.  Whatever it was, it was significant. 

What is extremely odd and/or interesting to me, is that my husband remembers very little about this journey.  (He has been so sick.)  He had a heart attack, bypass surgery, perforated his colon, the perforated colon repaired, an LVAD implanted, Congestive Heart Failure, and a heart transplant...those were the big things.  He had a lot of ‘smaller’ surgeries and procedures along the way, too. 

I have met so many people along the way.  I talked to so many other CHAIR-leaders, the people spending the time in a hospital just hoping and praying their loved one gets better.  I have such great admiration and respect for these people - wow, they are awesome.  As I listened to story after story from people who were in chairs next to me, I truly realize that the circle of people impacted by one ill person is so significant.  

As we are starting the healing process from this journey - me, mentally; my husband, physically;  I ask myself...is there anything I can do to help my fellow Chair-leaders?  Is there one small thing I can contribute to help the families walking this path?  I know the struggle these people are facing.  I love the quote, “The strongest people are not those who show strength in front of us...but those who win battles we know nothing about.”  That is how I feel about those individuals supporting an ill family member or friend.

That is why I decided to blog.  I love to write.  Maybe by recounting our journey, one small change could be - can be - made at a hospital that could make the path easier for all the Chair-leaders out there.

[chair-leader]

Outside & Inside World Collide

It was a dreary Sunday in St. Louis.  

To be totally honest, I do not have any clue what the outside weather was like.  I did run home mid-morning to get my husband some pajama pants, but I really wasn’t paying any attention to the weather.  

When I returned to Mercy Hospital, the curtain was pulled on my husband’s room.  As I peeked in, my husband was sitting in a chair and Dr. Allen Soffer was standing next to him.  I walked in and no one said anything for a few minutes.  Finally, my husband said, ‘Dr. Soffer was telling me that there is no further treatment that he can provide for me.’  As we processed that, my husband asked, ‘How much longer do you think I have?’  Dr. Soffer replied, ‘Three months, maybe six.’  

Then Dr. Soffer went on to to say that there is a program that he could possibly get us into at Washington University.  He was communicating with his colleagues at Wash U to check availability.

We sat at Mercy the rest of the day.  We kept the drapes drawn on the room, told friends and family we did not want guests, and...we watched television. Once in a while, my husband would say things like, ‘I really wanted to see the kids graduate from college.’  We decided not to tell anyone.  We wanted to see what Washington University had available.  We needed a plan first.

As I left Mercy that day, I called a very dear friend of mine who was battling his own serious health challenge.  (He would completely understand what I was going through.) Despite our decision not to tell anyone until we had a plan, I told my friend.  He said, ‘Oh, Richard will be fine.  You just need to get to Wash U.’  Here is the really weird thing.  I believed my friend.  A peace came over me and I thought...okay, we just need to get to Wash U.

Inside and Outside World Collide...

On Monday morning, November 24th, 2014, I arrived at Mercy Hospital.  I walked past a St. Louis County policeman.  He turned and said, ‘Are you Terri McEachern?’  I replied yes.  He said, ‘I know how sick your husband is.  There are a lot of people in both hospitals working on getting him transferred safely to Barnes today.  When he leaves here, you need to go home and stay there until tomorrow.  Do not go to Barnes with him.’  

I still do not know who the police officer was, how he knew who I was, or why I needed to go home. I was not watching the news at all.  

As the day unfolded, it became extremely clear that St. Louis truly was on edge. This was the day that St. Louis County Prosecuting Attorney Robert McCulloch would announce the grand jury decision on the Ferguson Police Officer Darren Wilson trial related to the death of Michael Brown.  County and City police were encouraging people to go home and stay there.

A transport team and ambulance arrived for my husband to take him to Barnes. I went home.  That was so difficult.

[chair-leader]

The LVAD

If you had to do it over, would you have the LVAD (Left Ventricular Assist Device) implanted again?  I see that question posted a lot on online chat groups.  Our answer...YES, absolutely.

The LVAD did exactly what it was supposed to do for us...it was a bridge to transplant.  My husband had the LVAD implanted in December, 2014, and had a heart transplant on October 10, 2016.

We had very few hiccups with the LVAD.  My advice...follow the directions for care exactly as instructed.  During the 22 months that my husband had the LVAD, he never took a shower, he rarely, if ever, drank water (he drank high electrolyte/low sodium fluids), we religiously did the dressing changes, and we never missed an appointment at the LVAD clinic.  (And yes...you can survive without a shower for two years!)

Was it stressful?  Yes, absolutely.  You have a loved one being kept alive by battery power.  

I think my husband and I had two different perspectives on the LVAD.  He viewed it as very temporary.  As soon as he got home from the hospital with the LVAD, he waited for ‘the call’ that a heart was available. (That doesn’t happen!) He lived each day waiting for the call...but, he did not miss out on life.  He attended family functions, went out with friends (great friends), and I do not believe he worried about something going wrong with the LVAD.  Lord, he was so happy to be alive, he never complained.

I worried more about something happening.  What if he was out to lunch with his friends and the controller died?  What if the power goes out?  What if he gets an infection?

It all worked out...having said that, we really worked at it.  An LVAD does take effort on the part of the patient and caregivers.

[chair-leader]

Haircuts and Healthcare

I can remember my dear friend Mark O’Donnell telling me a great story years ago.  By nature, Mark was a storyteller and Irish embellisher.  He was telling a story about his latest haircut.  He went in to get his haircut late in the afternoon.  Heather, his hairstylist, started spraying his hair with water then cutting it. Mark told Heather, ‘Wait. Wait. Wait.  What are your doing?’  His hairstylist said, ‘Oh Mark, I have done this haircut a hundred times this year. Your cut is no different.’  Mark went on to say that this haircut was much different.  It was his haircut.  Although Heather had done the cut hundreds of times before, this haircut was the most important haircut to Mark.  (Mark’s version had many more colorful details.  I gave the ‘condensed’ version.  But, the principle of the story is the same and very significant.)   Enter the healthcare connection...

I cannot guess how many tests, procedures, scans, etc... Richard has had over the past five years.  When in the hospital, nurse after nurse, and tech after tech, would enter the room and draw blood, give medications, take x-rays, etc... It was commonplace for the hospital staff.  Some talked about the weather or sports.  Many said nothing.  This was part of their daily routine.

While this was part of the daily routine for hospital staff, it was never part of our daily routine.  We would have found it most helpful if nurses would say, ‘Dr. Harper ordered this blood draw.  We are testing your INR (International Normalized Ratio).  We will have the results back within a few hours.’  

Here is what the patients and caregivers want to know... Who ordered the test? What are you testing for?  When will we know the results?  (And then...we would like to know the results!)

While nurses and techs may do these tests hundreds of times per week, this particular test, at this particular time, to this particular person...is the most important test to us. We want to know the particulars.

[chair-leader]

All I Really Need to Know I Learned in Kindergarten

I really don’t remember Kindergarten at all.  But, I do remember wanting to be a Kindergarten teacher.  For my first two years in college, I was an Early Elementary School Major.  I so vividly remember a college professor saying to us, ‘The absolute most important thing to remember on the first day of school is every child’s name.  It is a sign of courtesy and a way of recognizing them. When someone remembers our name, we feel respected and more important. It makes a positive and lasting impression.’ 

That is truly a life lesson.

Nothing irks me more than hearing a healthcare worker say, ‘This patient.’ Patient is an object.  ‘This patient’ that healthcare worker refers to is a person with a name and loved ones. 

I really noticed this practice at Mercy Hospital in St. Louis.  My dad had fallen ill and was taken to the Emergency Room.  Dr. Ed Ferguson was the attending physician in the Emergency Room.  He was extraordinary in manner and skill. He called both of my parents by name.  He explained every test that was being performed and what he was looking for.  I could not have asked for a better physician to be treating my dad.  

My dad was admitted to the Intensive Care Unit.  As we entered the unit, a young physician stood on the other side of the bed and said, ‘This patient could have a brain bleed and his kidneys may be shutting down.  I will need to look at this patient’s chart to see what is going on.  Do we have advanced care directives for this patient?’ 

Again, ‘this patient’ is a person with a name.  All of the sudden my dad went from being a person to being an object.  That was extremely chilling to me. 

We met two fine doctors in the ICU.  Dr. Taylor and Dr. Jacobs.  Again, two physicians that mastered the art of skill and manner.  They always called my dad by name, held my mom’s hand as they talked to her, and placed their hands on my dad’s shoulder to let him know he would get better. 

My dad’s health progressed.  After a while, he was transferred to a step-down unit.  My family was present as he was brought into this room.  Again, two nurses came in at shift change.  They literally stood in the middle of the room and spouted off, ‘This patient is diabetic, has a history of cancer, chronic kidney disease....’   My skin crawled as I heard that phrase again, and again, and again.  More importantly, I was stunned that my dad’s medical information would be shared with so many people present.  My dad’s grandchildren did not know that he had battled cancer.  That was a decision he made as he did not want them to worry.  Now...they all knew.      

[chair-leader]

Someone is ALWAYS Listening...

Someone is always listening...another life lesson!

Over the past few years, I have ridden many elevators at hospitals and medical office buildings.  In many elevators, I will see signs that say something like, ‘Medical Professionals - Please Refrain from Discussing Patient’s Healthcare Conditions on this Elevator.’  Great advice.  I would expect that a ‘professional’ should have already known that.

My dad has always been big on never saying someone’s full name when referring to them in a restaurant or public setting.  ‘Someone is always listening...’ I have heard that mantra from my dad for decades.  Dad...you were right!

As I would sit in hospitals during the still of night, I was dumbfounded (and heartbroken) at what I would hear.  One night my dad was in the ICU.  The nurses’ station was literally 20 feet from his bed.  As things quieted down in the ICU, and the nurses congregated around the central station, I heard more than I would have ever expected.  They talked about patients.  They talked about the patient’s PIA spouses and family members.  (I do know that PIA means Pain In the A!!) They talked about the hospital and the administration. They talked and talked and talked - way too much.  

That sign that is posted in the elevators, needs to be posted on every single computer terminal in a central setting.  People are listening!

[chair-leader]

R-E-S-P-E-C-T

Still writing about respect...

Many years ago I attended a seminar on autism spectrum disorders.  The guest speaker was a Medical Doctor with a Master’s in Business Administration and a Doctor of Philosophy Degree.  He said, ‘I am a medical doctor with an MBA and a Ph.D.  I always thought that the more letters I had after my name the more important I was or the more important I became.  I became an arrogant doctor.’

He went on to tell the story about then having a child that was diagnosed with an autism spectrum disorder.  He talked about the challenges of raising a child with a disability (or any child)... Do they have friends?  Will they graduate from high school, college?   He talked about how a child, when they are three or seven or 16 or 23, need the guidance, love, expertise, and support of their parent.  He said it took him a lifetime to realize that only three letters really mattered in the alphabet... DAD.  He talked about after becoming a dad, he became a much better doctor. ‘Being a dad means doing everything you possibly can for the betterment and well-being of your child.  That child needs you. That child depends on you.’  Like being a dad, being a doctor was not about him, or the letters after his name...it was about the patient.  He realized the patient was the only reason he was a doctor.  His heartwarming speech was beautiful.

My dad had surgery on June 14th, at Mercy Hospital in St. Louis.  The surgeon called in a ‘highly respected’ infectious disease doctor at Mercy for a consult. ‘This doctor is one of the best at what he does,’ we were told.  We were so grateful that the surgeon and this specialist could do, would do, everything possible to help my dad as we were so anxious about his situation.

Two days after surgery. No results. Five days after surgery. No results.  My mom called the infectious disease doctor’s office, ‘We will call you as soon as we know anything,’ they said. 

Eight days after surgery my parent’s visited the surgeon.  He had the pathology report that my parent’s had been waiting anxiously days for.  ‘You will need to call the infectious disease doctor tomorrow and see what he recommends as the next course of treatment.’

Today my mom called this doctor’s office.  He is on vacation. 

I could hear such a resigned tone in my mom’s voice today after she made the call.  She said, ‘That is what happens when you get older.  You just become less important.’

So, at a home in St. Louis, two elderly people are waiting anxiously to hear anything from a doctor as to the next course of treatment.  They have waited ten days.  And, they will have to wait just a little bit longer.  As the saying goes...that doctor has gone fishing!

What a life lesson that guest speaker highlighted years ago.  It does not matter what letters are behind your name... MD, PhD, JD, MA, MBA.  What really matters in life is R-E-S-P-E-C-T.   Respecting people.  Respecting patients.

The patient is the most important person in the medical circle.

[chair-leader]

R-E-S-P-E-C-T

It was 1967 when Aretha Franklin first sang that song.  And today, 50 YEARS LATER, that is all people still want.

It has been seven months since my husband had his heart transplant at Barnes Hospital.  I was just starting to feel ‘normal’ again after years-and-years of hospital and doctor visits.  Then this week, my dad was unexpectedly admitted to Mercy Hospital in Creve Coeur.  Boy, it did not take long for the overwhelming feelings of anxiety, frustration, and dizziness to return to my psyche.

My dad is 80-years-old.  He was ready to go home today after a long week in the hospital.  Here is how his day unfolded...

Surgeon:  ‘I believe you can go home.  But, I defer to the Infectious Disease Doctor.’

Four hours later...(And, I truly believe not one person came in the room during that four hour span.) 

Infectious Disease Doctor arrives.  ‘Your pathology report has not been read yet. Pathology does not work on weekends.  Let me talk to my colleagues and see if we can send you home today and adjust your medications on Monday.’

One hour later...

A nurse arrives to schedule home healthcare.  She is going to see which company has services available on Monday.

Now...three hours later at 7:15 pm.  No answer.  The nurse knows nothing. Nothing is written in my dad’s file.  So, we know my dad will be staying at least one more day.  That is not the point.  We are fine with that if that is in his best interest.  HOWEVER, we would have loved for ONE doctor, ONE nurse, ONE tech, or ONE hospitalist to relay that message to my dad.  Instead, we have a kind, gentle, thoughtful man sitting in a hospital room waiting to hear from anyone!  

What in the world happened to respecting the patient?

We have cell phones, tablets, computers, texting, email, house phones, and public address systems, and yet, no one can communicate. 

[chair-leader]

A Tough Pill to Swallow

1000 people will die today due to preventable hospital errors.

When I read that statistic on multiple websites and in many publications, it makes my head spin and heart break.  1000 people.  Not just today...EVERY SINGLE DAY. 1000 people will die on this day due to preventable hospital errors. 

Unfortunately, I believe that statement is most likely accurate.

As my husband spent five long years on the medical journey to a heart transplant, I was overwhelmed and dumbfounded by the conflicting information that we received along the way.

In my non-medical opinion, I found way too many medical Chiefs and only one Indian.

When we started our journey many years ago, my husband was under the care of Dr. Allen Soffer, Cardiologist.  Dr. Soffer would visit the hospital each morning and evening.  Hospital staff would defer to Dr. Soffer.  They would wait for his direction and we would wait to talk to him.  We knew who was in charge.  And, after years as his patient, Dr. Soffer knew us.  We had complete confidence in Dr. Soffer and the decisions that he made.

Then we saw, and experienced, a cosmic shift in healthcare.  

Now at hospital and in healthcare settings, we have Hospitalists, Interns, Fellows, Nurse Practitioners, Physician’s Assistants, nurses, technicians, aides...and a partridge in a pear tree.  What you do not have is the one doctor who knows you.   

When primary physicians visited their patients in the hospital, did we have 1000 people dying each day due to preventable hospital errors?

As a caregiver sitting next to the patient in the bed, you see a revolving door of people coming in the room.  With each person comes a new set of directions, advice, medications, course of treatment.  It is absolutely mind-numbing and quite frankly - astonishing.  You can have two people in the same hour visit giving completely different information/opinions.  Here is one very small, but recent, example...  

My dad was just released from Mercy Hospital in Creve Coeur last week.  Just prior to leaving, a white coat stopped in, I am unsure of her title/position/rank, she said, ‘We have not given you your antibiotic this morning, this evening take two antibiotics and then tomorrow go back to one in the morning and one in the evening.’  Thirty minutes later, the nurse came in to release my dad... ‘This evening you will need to take one antibiotic...’ I said, ‘The woman that was just here, said to take two antibiotics this evening...’  Her reply, ‘Okay, I guess do what she said.’  (’Okay, I guess do what she said’... That does not leave much confidence with the patient or the caregiver.  And, while this example may not seem significant, it is actually extremely important.  My dad has chronic kidney disease.  We have heard for months how hard antibiotics are on his system.  We want to be confident that we are doing what his kidney specialist would recommend.)  

That comes back to 1000 people dying each day and my chief complaint...

As an ‘Indian,’ we need one Chief in charge.

[chair-leader]

A Tough Pill to Swallow - Part 2

We have lived through the cosmic shift in healthcare.  

We saw healthcare change from a primary care physician being in charge to Hospitalist, Nurse Practitioners, Physician’s Assistants, Fellows, Interns, etc... all writing prescriptions and changing the course of treatment along the way.

Here is what I learned from the healthcare shift... 

For me, our pharmacist became the absolute most important person on this journey.  I cannot underscore that enough.  As doctors and medical professionals from multiple locations weaved in-and-out on this road, and wrote and altered prescriptions, Rajen Thanki, our pharmacist at Sam’s Club in Town & Country, Missouri, remained an absolute constant.  He caught errors.  He kept track.  He stayed in communication.  He saved my husband’s life.  

Medicine was all new to me.  I have been so fortunate to have been able to cure every ailment I have ever had with a Band-Aid and Neosporin.  To be completely honest, I never gave much thought to the extraordinary role the pharmacist plays in the healthcare circle.

It wasn’t too long into our journey that I realized the conflicting information one receives in the medical world can be overwhelming.  The multiple names that one prescription can have is dizzying.  The number of people writing/changing prescriptions is exhausting.  Eventually, I waved the white flag and surrendered. I learned to rely on Raj.  Raj gave (gives) me great peace and comfort.

A few years ago my husband was released from the hospital following surgery. He had a boatload of medicine.  Within a few days he became ill with a run-of-the-mill chest cold.  (Had we been smarter, we would have realized nothing was run-of-the-mill for my husband.)  He went to an Internist within his network of providers and one recommended by his surgeon.  At that visit, a prescription was written.  When I went to pick the prescription up, Raj said, ‘If Richard takes this, he will die.’ Later that evening, two additional doctors called to tell us not to take that prescription.  The prescription was written in error and would interact with another prescription my husband was taking post-surgery.  

Having Raj oversee my husband’s medicine has been a lifesaver for me.  I wish everyone was fortunate enough to have a pharmacist as diligent and skilled as Raj.  I will never be able to thank Raj enough for what he has done for my family.

My parents are not fortunate enough to live close enough to have Raj as their pharmacist.  They use a large pharmacy provider.  As recommended by his doctor, my dad gets automatic refills on a few of his medications.  After a recent hospital stay, my elderly dad’s prescriptions were changed. My mom picked up the new prescriptions and he began taking them.  A few days later, that automated voice called my dad and said he had prescriptions waiting to be picked up.  Of course, he picked them up and began taking them as noted on the bottle.  He started to not feel well.  My dad had doubled-up on his medications. Medicine can certainly cure - and cause - many ills. I cannot fathom why with all the technology available in the medical world, automatic refills would not be halted when prescriptions are altered.  That is a tough pill to swallow!  Having said that, that goes back to the absolute importance of the knowing and completely trusting your pharmacist.  They are the gatekeeper!  

In the past few years, I have seen so many doctors, nurses, technicians, aides...more than I will ever remember.  But, I will forever remember our extraordinary pharmacist - Raj!

(I am grateful to all the future pharmacist out there...the field you are in is truly lifesaving!)

[chair-leader]

Cause of Death: Heart Disease. Cancer.   Medical Errors.

Thursday, July 17, 2014

WASHINGTON, July 17 – Preventable medical errors in hospitals are the third leading cause of death in the United States, a Senate panel was told today. Only heart disease and cancer kill more Americans.

That was 2014.  I believe that is still true today.  In my non-medical opinion, I believe this statistic is due to the conflicting information a patient and their caregivers receive while getting treatment.

My dad was just released from Mercy Hospital in Creve Coeur, Missouri, yesterday after a one week stay following foot surgery.

Here is a SMALL sample of the care he received:

One evening my dad’s blood sugar was low.  The RN asked the tech to get him two orange juice containers from the hall pantry.  He drank the juice.  The very next morning a tech took my dad’s blood sugar.  It was low again.  I told the RN that I could go get him an orange juice from the pantry.  She said, ‘He should never, under any circumstances, have orange juice due to chronic kidney disease.’  I told her that was the solution to the low blood sugar last night by the staff.  She said, ‘they must not have noticed the chronic kidney disease on his chart.’  Really?

Immediately following my dad’s foot surgery the surgeon came in to speak with my family.  He was very clear that my dad should not put one ounce of weight on his foot for two months.  He should stay in a wheelchair. It is that serious. Two days later, the physical therapist came in, ‘Let’s get you up and moving around.’ That person taught my dad how to walk with a walker.  (Should my dad be using a walker?  That completely contradicts what the surgeon said two days prior.  Today’s nurse said she would call the surgeon.  We never heard another word.)

* * * * * * * * * * *

Here is a photo of my dad’s foot.  We completely understood the need to keep weight off his foot and to continue his antibiotics as prescribed.  Continue reading...

My dad was released yesterday.  He went home with a PICC line (Peripherally Inserted Central Catheter) and wound vac.  We were told by Dr. David Janssen, Infectious Disease, the importance of continuing the antibiotic treatment at regular intervals due to the seriousness of my dad’s wound.  My sister and I were told by two different people at Mercy (Bev and Melody) that my dad’s medications would be delivered to his house between 6-8 pm.  A visiting nurse would call at 6:30 pm to schedule a visit between 7-8 pm to get his intravenous medications started.  

* * * * * * * * * * *

It is now the day following my dad’s release from the hospital.  The medicine was delivered as scheduled.  No nurse called.  No nurse stopped by.  My parent’s cannot get in touch with anyone.  My dad has now missed three rounds of his antibiotics.  We are calling everyone we possibly can and cannot get in touch with anyone!

#medicalerrors #conflictingmedicalinformation #patientcare

* * * * * * * * * *

I am deeply perplexed by hospitals.  Each member of the medical team that visits a patient spends an extraordinary amount of time looking at the computer in the room.  They enter data profusely.  And yet, there is an extraordinary breakdown in communication.  Why?  What causes that?  What is the solution?

One area that I really paid attention to on this last hospital visit was the way staff members entered computer data.  While they were entering data, their phones ring and they take a call, an associate enters the room and asks a question, or the patient may say something.  They are interrupted.  On several occasions, after an interruption, the associate would look at me and ask, ‘What did I say his blood pressure was?’

* * * * * * * * * * *

I am deeply concerned about conflicting information at hospitals.  I know truly bad outcomes can result from misinformation or conflicting information.  I have seen it happen.  With everything that happens at a hospital that is truly dizzying, I know that there are a lot of great people working in the hospital field. Chris, Abbie, and Blaine worked hard to ensure that my dad was well taken care of during his stay on the 4th floor at Mercy.  I am so grateful.  After spending a very emotional, and physically and mentally exhausting week with my dad, it was so great to have those rays of sunshine helping my dad.  

[chair-leader]

97 Minutes.

I want a do-over.  I can remember playing games at recess in elementary school.  When something didn’t go as planned, we always cried out that we wanted a do-over. I want a do-over of August 3rd, 2017.

It was a typical busy day. I had worked during the day, then came home and packed my son up for school as he was leaving the next day for his senior year in college.  As a respite, my husband and I decided to go out for a quick dinner. Within minutes of returning home, my husband’s speech became garbled.  I knew he was having a stroke.  For one brief moment, I thought about putting him in the car and driving him to Barnes Hospital – which is less than 15 miles from our house.  We know and trust Barnes Hospital and its exceptional doctors.  My husband suffered from Congestive Heart Failure years ago.  Following that diagnosis, he had an LVAD (Left Ventricular Assist Device) implanted and a truly successful heart transplant in late 2016.  Both procedures were done at Barnes.  I was conflicted.  The only thing you ever hear about a stroke is to get help as quickly as possible.  I called 9-1-1.  I asked my husband to do everything the 9-1-1 operator asked.  He could lift his arms, smile, and he understood what I was saying. He walked perfectly fine.  The paramedics arrived.  I asked them to take my husband to Barnes.  They said they couldn’t.  With a stroke patient, they ‘needed to go to the nearest hospital.’  That hospital was Missouri Baptist Medical Center.

We arrived at Missouri Baptist Medical Center.  The Emergency Room was very chaotic.  The doctor confirmed that my husband had a stroke.  People were coming in and out of the room.  Several staff members talked about the ‘miracle drug’ t-PA.  The doctor on duty was conferring with others as to if he should administer this ‘miracle drug.’  It was decided they should.  There was a ‘small chance’ that something could go wrong.  A few people on staff had never seen anything ‘go wrong.’ They shared anecdotal instances of patients that were helped from the drug.  Shortly after receiving the drug, something went terribly wrong.  My husband was screaming in pain.  The attending Emergency Room doctor turned to me and said, ‘That was a bad result.’  Completely in shock, I replied, ‘He seems like he is in such pain.’  The doctor replied, ‘Oh, he is.  The pressure in his brain is building significantly.’  I asked what needed to be done… ‘We need to get him to Barnes as quickly as possible.’  I heard that over and over and over again – by multiple staff members. ‘He needs to get to Barnes, they have options for helping your husband.’  Great.  Let’s get him to Barnes.  Truly, that is where I wanted to be anyway.

97 minutes went by before Abbott Ambulance arrived to transport my husband.

97 minutes is a lifetime for someone screaming in pain while the pressure builds in his head.  In St. Louis, I could fly to Chicago in less time.  I could get in my car and drive to Columbia, Missouri – right in the middle of the state.  And yet, to get my husband, screaming in pain, from one hospital to the next took 97 minutes – before help arrived.  The hospitals are approximately 11 miles apart – straight down the interstate.  The 97 minutes was an eternity for me, my children, and my extended family.  We certainly did not understand the delay.  My husband’s brain was bleeding and pressure was building inside.  Help was 11 miles away.  After so much delay, my mom inquired if we could just take him to Barnes ourselves.  ‘That isn’t necessary.  We have the ball rolling,’ we were told.  As we got more anxious, a nurse told us to go ahead and head toward Barnes as my husband would be leaving soon via ambulance.  If we left at that time, we would get there at the same time.  We left.  I never saw my husband conscious again.

We got to Barnes and waited. And waited.  And waited.  My husband did not arrive.  We called back to Missouri Baptist.  My husband had not left.  I felt helpless.  My God…my husband was screaming in pain and now alone.  Should we drive back to Missouri Baptist?  I could see the angst in the eyes of our children.

Over the next few days, we heard repeatedly that little could be done for my husband.  ‘After blood sits for an extended period of time on the soft tissue in the brain, the damage is done.’  I know the blood sat for an extended period of time as we waited for help at Missouri Baptist Hospital.  My husband passed away on August 8th, 2017.  Since that time, I have spent many nights lying in bed watching the clock tick away for 97 minutes and wondering what went wrong? What could have been different?  Why was there no apparent Plan B? Was t-PA the best option?  Should a heart transplant and LVAD recipient receive t-PA? We were never told of any other options.  If only I could have a do-over.

In my opinion, there was no Plan B.  By total default, Plan B seemed to be to ‘get him to Barnes as quickly as possible.’  Yet, 97 minutes went by before a transport arrived.  It must be extremely rare for something to go wrong with the t-PA drug; however for us, something did go wrong.  Everyone seemed stymied. Doctors, nurses, the pharmacist…everyone just seemed completely baffled to me.  If you are going to administer this powerful drug, there must be a Plan B.  

With regard to the paramedics that came to our house that evening, they noted they are required to take stroke patients to the nearest hospital.  If within a reasonable distance, why are they not required to transport stroke patients to the nearest Level One Stroke Center?  We have five Level One Stroke Centers within 15 miles of our house.  Missouri Baptist Hospital is not one of them.

As I have thought about this continuously since August 3rd, I would understand not having a Plan B if you lived by a rural hospital.  Staff would be giving the patient what they believed to be the best option at that time. But, if you live in a suburban or urban setting, you should go to the hospital that quickly can implement a Plan B should something go wrong.  What if we had gone to Barnes on that fateful night right from the beginning?  IF something went wrong with the t-PA, a drain could have been put in my husband’s head almost instantly to release the pressure in his brain.  Would that have changed the outcome?  We will never know.

I had the opportunity to talk to a doctor at Missouri Baptist following my husband’s stroke. He said that the damage was done as soon as the t-PA drug was administered.  But, the doctors and nurses on duty that night believed Barnes could help my husband.  They told us that often.  Why else would they have initiated the transfer?  Why couldn’t my husband get to Barnes?

If I could have a do-over, I would have driven my husband to Barnes right from the beginning.  I did not realize the window for helping a stroke victim is within the first few hours of symptoms.  I could have made it to Barnes.  I did not realize that Missouri Baptist Medical Center was not a Level One Stroke Center.  “IF” something goes wrong at Missouri Baptist, Barnes is the go-to facility. Yet, we had to wait for 97 minutes for help to even arrive at Missouri Baptist to transport my husband. Had anyone said to me on August 3rd, ‘We would like to give your husband this drug.  If something goes wrong, we will not be able to help him. We would need to transfer him to Barnes and you will have to wait 97 minutes before a transport arrives.  BUT, you are within the window of getting help, if you would like to drive to Barnes, and they give him this drug, and something goes wrong, they can help him immediately.’  I can say with 100% confidence, I would have driven to Barnes.

Sometimes we did get do-overs at elementary school recess.  It was just fun and games.  I can’t have a do-over on August 3rd.  A life I loved was lost.

 Terri McEachern

14 November 2017