Pandora.

So much time passes between entries because it takes everything out of me to write about this nightmare.  There isn't a day I don't think about it.  

     Pandy was the aunt that every kid wishes they could have.  She drove us around in her firebird blasting her music.  I loved it.  She gave me inflatable furniture for my birthday...when it was in style of course.  What girl didn't want a blow up chair?  She was a hair stylist so she was my go-to for everything.  She french braided my hair for dance recitals and styled it for prom.  I even let her experiment hair colors and eyebrow waxing on me.  

I am most like her.  

I am independent and unique.

     The last week of her life we were at Pop's discussing baby names.  I even gave her my gift early.  I couldn't wait for the baby shower.  She had always wanted a baby and was only 2 months out from her due date.  A couple days later I met her at work to cut my hair.  We went to the mall to shop for more maternity outfits and then we both got a giant pretzel, sat down on a bench, and had our final conversation.  I don't remember what we talked about, but it doesn't matter.  I believe God gave me that time with her for a reason.  

     I was at play rehearsal for a show called Steel Magnolia's when I got the call.  My mom told me not to rush and to come to the hospital when I could.  But I knew deep down this was worse.  I left rehearsal immediately.  When I made it to the hospital she had already been pronounced dead.  I still have my parking stub from that night.  I couldn't seem to throw it away.  

     Pandy had met her husband Don that day at work on October 18, 2004, when she began experiencing chest pains.  It became bad enough for them to seek medical attention.  I know at one point she even vomited.  When she was checked into the ER, they had to run so many tests because they didn't know what was wrong.  They were also dealing with the fact that she was 7 months pregnant and the baby could be in danger.  Her husband even told them, if you can only save one, please save Pandora.  The doctor went into surgery knowing she only had a 10% chance of survival.  He said that ordinarily he wouldn't have tried, but he knew that she was only 37 and he wanted to do his best to give her baby a mommy.

From Pandy's pregnancy journal: Mon. Aug. 30th, 2004

"I really never thought I would be lucky enough to have a daughter of my own.  

I will get to experience the mother, daughter relationship." 

Not only had Pandy lost her mother, but now her daughter would live to experience that same pain.

Charlotte Pandora playing dressing up
with her mom's accessories.

   

     We were able to see Pandy after she had passed, and she was as beautiful as always.  Just a "sleeping beauty".  I sat alone in a quiet hall at the hospital that night and cried.  

     The baby was care flighted to Dallas that night.  It was amazing to think that she would survive.  And we would spend the next several weeks by her side until she could come home to the life her mother had prepared for her so carefully.  

    Everything was in place for the baby we would come to know as 

Charlotte Pandora.  

Her dad had named her after her mother and grandmother.   

 

Terry.

     My dad has always been a hard worker.  He never complains, and rarely gets ill.  But on Monday, October 19th of '98, my dad came home from work feeling sick.  We knew it must be a big deal if he was even bothering to mention it.  He tried not to stress too much about it and went off to work the next day.  By the time he got home on Tuesday, he told my mother he was going to see a doctor.  As they were about to send him home, they discovered that not only was his heart enlarged, but he also had a murmur.  He was sent to hospital immediately. 

     While in the hospital, he was being pumped full of antibiotics.  They knew that his heart valve was bad but no one was sure why.  They could only assume a virus had attacked it.  Nothing else was apparent.  After days of watching him get worse, my mother was certain he was dying.  His oxygen levels were consistently dropping and his body was unaffected by the antibiotics.  My mother was asked to leave the room so the doctors could speak with my father privately.  They drilled him about his habits, assuming he had taken some sort of drugs.  Why wasn't he improving?  They didn't understand what was wrong and that seemed to be the only logical explanation.  He swore he had done nothing.

     As Saturday rolled around, my dad's aorta was beginning to rupture and know one knew.  They fed him breakfast because his valve replacement surgery was scheduled for later.  However, a short time after, people began to rush around and my mom was promptly asked to sign off on paperwork.  They needed to get him into surgery immediately!  The surgeon had opened his chest just in time to save his life.  My dad was only 34 years old.

Terry, Rhonda and Andy 2008
10 years after surgery

     I remember very little during this time.  This was the most trauma I had ever experienced and I believe I have blocked it all from memory.  The only thing I do remember is visiting my dad in ICU.  He was so swollen I didn't recognize him.  After all, he was "clinically dead" for roughly 12 hours.  I didn't stay long.  I couldn't believe what was in front of me.  Little did I know it would always haunt me.

     At this point, red flags began to surface.  What was wrong with our family? Could it honestly all be coincidence?  My brother Andy and I began seeing a cardiologist shortly after my dad's surgery. They had never heard of anything like what we were describing to them.  The only thing they knew to do was to begin measuring the size of our aortas.  At the time, I was in 7th grade and Andy was in 4th.  The doctor told me that the size of my aorta was classified as a "gray area".  They would need to see me once a year to monitor any future growth.  Since Andy was so young, his aorta registered at normal, but given a developing family history, he would also continue to be monitored. 

     From this point on, I would live each day in fear as our questions would remain unanswered for 13 years.  The sound of my heartbeat was no longer a sign of life.  It was a constant reminder of what might be out to get me.  What did this mean for us?  Who would be affected?  How would it change our lives? 

I still wish I didn't know the answer to those questions.

Todd.

     Charlotte left behind a husband and 4 young children.  Todd age 13, Amber age 11, Terry age 8 and Pandora age 5.  Each dealt with grief in their own way as time passed.  Much like my grandmother Charlotte, I also never knew my Uncle Todd.   

     Todd and his wife Alynda gave birth to a son on November 1, 1982.  They named him Christopher James Wilson.  Christopher was Todd's first name, and James was my grandfather.  Though I never knew Todd nor witnessed his interactions, every picture I've seen portrays him as a father who loved his son.  I think he saw it as an opportunity to give Chris the life he had been robbed.  Unfortunately, after several years of marriage, Todd and his wife separated.  He was distraught over the situation and began drinking and using drugs more heavily.  On Sunday, December 16th, Todd complained he didn't feel well.  He stuck it out through Sunday but on Monday had decided he needed to go to the hospital.  Once admitted, the doctors quickly found out he had taken Speed a few days prior.

  

      I'm uncertain when things took a turn and about the details the doctors gave him.  But his brother Terry (my dad) recalls that he was unconscious when they arrived to see him.  My mother said she remembers the doctors saying there was nothing they could do to save Todd.  He passed at 8:20pm on December 17th, 1984.  The death certificate states the cause of death as:

1. Respiratory failure (interval between onset and death 1hr 20min)

2. Due to or as a consequence of acute massive pulmonary edema (fluid in the lungs) with acute myocardial infarction (heart attack, interval between onset and death 24hrs). 

3. Due to or as a consequence of a history of speed injection. 
  

     At this point no one was thinking the two deaths could be related.  It seems to me that when the doctors knew he had taken Speed, they gave up.  Possibly assuming he wanted to die.  Maybe I'm biased, but I'm confused about the timeline of events.  I thought that when a person overdoses, they die quickly.  Todd had taken the drugs 2-3 days earlier.  I know that's not true in all cases and their may be many like his.  But I just don't buy into it yet.  There had to be a better explanation for what was happening.  Was it honestly just a coincidence that he was preceded in death my his 30 year old mother?

     Todd passed away at the age of 25 leaving his son behind the same way his mother Charlotte had left him.  My grandfather would now bury his wife and son side by side.

Todd & Chris

Charlotte.

     My grandmother Charlotte was such a beautiful woman.  Men would stare as she cruised by in a convertible with her hair blowing in the wind.  Station wagon?  Pass.  She carried all four kids in style.  People have often said that no matter where she was, her kids were always with her.  I know they didn't have a lot of money, but Charlotte made sure the kids were always dressed nice and that their hair was perfectly in place.  They were her life and I like to think she was a great mother.  I've always referred to her as Charlotte because I never knew her, and I keep her picture close because I long to.  I'd give anything to hear her voice and see her mannerisms.   

     On May 30th, Charlotte was in Tyler for the day with her son Todd.  She had started to feel sick so she contacted her husband James (my grandpa).  She told him that she felt she needed to see a doctor but he urged her to come home.  I'm sure he felt she was overreacting and would feel better when she could relax.  Charlotte and Todd weren't home for very long before an ambulance was called to pick her up.  She was rushed to the hospital.

     My mom and I recently spoke with one of the men who was on the ambulance with her.  He was only 16 at the time but said he remembers the day so vividly.  We were told that she was in excruciating pain.  She specifically said the pain was in her back and that it was worse than child birth.  Coming from a woman who bore four children, she had her facts straight.  Once they arrived at the hospital, doctors desperately tried to figure out what was wrong.  I don't know how long she was conscious and I can't imagine her fear.  I've been told that she was being pumped with blood and knowing what we now know about the condition, that was the last thing she needed. 

     Charlotte died at 1:45am on May 31, 1972 at the age of 30.  Her death certificate says she only lived 14 hours after the onset of symptoms.  The cause of death was stated as a spontaneous aortic rupture of the thoracic aorta.  Of course at this point to our family, it was just that.  Spontaneous.

     

Terry, Amber, Pandora, Charlotte & Todd

Official Diagnosis

After being diagnosed in November 2011 with a genetic heart condition named TAAD (Thoracic Aortic Aneurysm & Dissection), I've decided to blog about it.  

I've desperately searched for answers specific to the condition to ease my mind and I continue to come up empty.  I thought this would be the best way to keep friends and family in the loop as I post new information as it is given to me.  And maybe someday this blog can give someone else the answers they are looking for. 

I've basically lost my entire family to this silent killer.  The specific gene was not even discovered until 2007.  By that time 5 of my family members had already lost their lives.  It happens so fast and there is little time to react. 

Since this is all new to me, the medical terminology can be confusing.  From what I understand, based on the current data, TAAD is caused by a genetic mutation typically passed through a male.  The specific mutation affecting my family is called ACTA2 and when someone has it, there is a 50/50 chance of passing it on to their offspring.  In a nutshell, this mutation causes a genetic weakness in the aorta.  When the condition is unknown or not followed closely, a dissection can occur.  At that point, the survival rate spirals drastically.  Unfortunately I've had to witness this nightmare 4 times.  I don't have it in me to watch again.  Especially when I'm the one who's "next".

I dedicate this blog to my grandmother Charlotte, Uncle Todd, Aunt Amber and Pandy, my dad Terry, and my cousin Chris.  I miss you all everyday and I am so blessed to still have my daddy.

"You never get over the loss of a loved one.  You simply learn how to deal with it."