I am not ok

It’s been one month since my daddy passed.  One month since I held his hand and told him it was ok.  He could let go.  We would be ok.  But we aren’t ok.  I am not ok.  I am broken and raw and angry.  Waves of unbearable sadness wash over me making it hard to breathe.  Hard to move.  Hard to do anything but cry out in agony.  I’ve gone back to work, back to my business and my life, trying my best to pretend like I’m not hollow inside.  Pretending it isn’t taking everything I have just to show up.  I am not ok…. Time will dull the pain but nothing about this will ever be ok.

 My daddy was a good man.  He was ripped away from us too fast, too young and so traumatically.  His death like so many others was preventable.  Somebody made a mistake and now he’s gone.  Some PEOPLE made mistakes and now my child and his other 2 grandchildren, will never be able to see their grandfather beam with pride as they graduate from high school, score points in their softball games, watch them march in band or see them grow up.  Due to mistakes made and a very potent and dangerous drug my father isn’t here to tell me I’m going to be ok when I just need my daddy.  I’ll never hear him tell me how proud he is of me or how much he loves me ever again because someone made a mistake. 

In December of 2019 my dad was prescribed the drug amiodarone for Atrial Fibrillation.  Within days we found out that dad would need quintuple bi-pass heart surgery right away.  He came through with flying colors like he always did.  We was weak but he made it.  He beat it.  Over the next year he got stronger, lost a ton of weight and we thought he was out of the woods.  He was walking with mom every day.  He was happy and healthy.  Little did we know that the drug he was prescribed before his heart surgery was silently killing him.

In December of 2020 dad started getting weaker again.  He was irritable all the time and just tired.  He toughed it out like he always did.  When he finally decided to go to the doctor, they chalked it up to some of his other medicines he was taking for diabetes and switched them out.  He felt better for about a month.  Seeing him all the time like I did I didn’t realize how frail he was looking.  How small he was getting.  He was just dad.  My dad.  My rock and my hero. 

We had a great Father’s Day with him.  We laughed and ate and showered him with gifts.  It was a really really good day.  The very next day he couldn’t breathe.  Mom rushed him to First Care, his skin grey, him struggling to breathe and they immediately rushed him next door to the Emergency Room.  There they found fluid around his heart and words like “heart failure” were thrown around and he was quickly admitted and moved to another hospital that was better equipped to handle his condition.  Emma and I arrived shortly before the ambulance did and even then, when they wheeled him in, I thought to myself “He’s fine.  He will get through this.  It’s just a bump in the road. He’ll be home in a day or two.” But he never got to go back home.  Instead we spent 2 weeks watching him fade and learning about this dangerous drug he was prescribed and how someone (people) dropped the ball and didn’t follow proper medical protocol with him.  We heard things like “glass lungs” and “lung toxicity” and ventilator and life support.  Things none of us were prepared to hear or face.

Dad died because he was prescribed a drug that was not FDA approved for A-Fib.  He died because his cardiologist didn’t follow the every 6 month protocol and scan his lungs for this known lung toxicity side effect.  My daddy died because someone decided to use this toxic drug for a non-approved off label use.  I am angry.  I am overwhelming heartbroken, and I am angry.

Amiodarone is a drug used to treat certain types of heart arrhythmia's.  The FDA reluctantly approved Amiodarone in 1985 for compassionate use for arrhythmia's but NOT for A-Fib. Mainly because of the side effects.  Clinical trials were never done and it remains off label today.  Due to the side effects, including lung toxicity, thyroid problems, skin issues and more patients are carefully monitored every 3-6 months.  This includes but is not limited to blood work and lung x-rays.    Read that again.  My dad was on this drug for 18 months and never once was he given a lung x-ray.  Not ONCE.  Not until he was admitted to the hospital unable to breathe.  Not until it was too late to help him.

I held my daddy’s hand while he gasped for breath for 2 weeks.  Muscles not used for breathing strained to help as his whole body gasped for breath.  I watched as he slowly lost his ability to move.  I prayed as his kidneys started to shut down.  I cried as he had to be sedated so he would stop fighting the machine permanently attached to his face forcing oxygen into his irreparably damaged lungs.  The image of him telling us to just let him go is seared into my memory.  He fought hard.  His body was tired.  His lungs filled with fluid and what looked like glass on the x-rays.  His kidneys failed.  We took him off of all life sustaining care including the oxygen after the doctors told us there was nothing else they could do.  We cried and prayed and sang one of his favorite songs over him.  We held his hands, stroked his hair and kissed his forehead as he passed.  My hero.  Forever my hero.

I am not ok.  We are not okay.  We are angry and we won’t stop until we raise awareness about the dangers of this toxic drug.  We will not let his death be just another life this drug takes.  We will fight for him because he no longer can.  We will scream at the top of our lungs with every breath we take until somebody hears us.  This drug is dangerous.  It’s killing people.  Doctors are not following protocol with patients.  Doctors are not fully explaining these side effects to their patients, many of them elderly.  This needs to stop.  We will not stop until this drug is removed from the markets.  We will not stop until doctors fully explain what could happen if you take this drug.  We will not stop until negligence concerning the protocol for following patients on this drug stops.  We will not stop fighting. 

I am not ok.  Maybe one day I will be....but today is not that day.

I miss you Dad.

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