Talking About….

 

Kayleigh’s Phight



Meeting Kayleigh at the NOLA Author Event.



Kayleigh as her journey to diagnosis begins, and at the bottom, today.

  

                Writing and publishing books has brought so many wonderful people into my life.  It’s truly my favorite part of the gig.  While some interactions are very brief and mostly done in passing, there are some people I meet who make such an impact that they can’t be forgotten.  Kayleigh’s mother is one of these people.  We met at a signing, became Facebook friends, and kept in touch afterwards.  I remember her writing posts about how scared and uncertain she was because her daughter was having health issues.  She’d have trouble breathing on occasion, even going so far as passing out at school.  The problem was, the doctors couldn’t figure out what was wrong.  Test after test came back normal.  Recreating the situations didn’t give answers because she did fine when the doctors asked her to exert herself.  The family was left with a string of questions and no clear answers. 

                Here is part of the story, in Kayleigh’s mother’s own words as to how her “phight” began. (Some sections that detail repeated tests with no answers have been omitted from the passage.)

Kayleigh, one of the many PHaces of PH.

 

On a Friday in September 2013 (age 7) I got a call from her school that said Kayleigh had passed out. I was there within a few minutes. When I got into the "sick room" at her school she was surrounded by several teachers, the principal and a few others. They were fanning her, had ice on her body, were giving her water and feeding her ice. I cannot tell you how much I love and appreciate the staff at her school. They explained that she had been running during PE, turned extremely pale then fainted. When I got to school she was a little pale but that was it. But I still brought her to the pediatrician's office.

The pediatrician did lab work, a chest xray and had her jump up and down then run all over the hallway trying to recreate the "episode". The lab work showed she was coming down with a virus. They said keep her hydrated and she should be fine.

These "episodes" continued to happen. All of them happened with exercise and none happened at home. We reported each of them to the pediatrician as well as the pedi cardiologist. In March we went back to the pedi cardiologist. He did an Echo, EKG then ordered a 30 day monitor. Again no answers. Again said she needed more exercise. He also said he thought she may be having anxiety attacks when she was exercising and that was causing her to pass out. He sent info to her pediatrician to have her sent for an anxiety check.

By this time I was fed up with feeling as though I was wasting his time and felt defeated.

On July 1st we were on vacation in San Antonio swimming in the hotel's pool. I had been playing with my nephew Brayden, teaching him to go to the bottom and push back up. Brayden and I had been doing this for about 10 minutes when Kayleigh decided she wanted to play too so I started playing with her. In the back if my mind I was thinking "this is good exercise for her". I'd push her to the bottom of the pool then she'd shoot back up like a rocket. After about 2 or 3 times Kayleigh said she needed a rest but I told her no that she needed to keep going, she needed to exercise. We argued back and forth and ended up bobbing into the deep. I could only touch on my tip toes so I continued to bob. Kayleigh, thinking I was going to dunk her, fought me. I lost my touch then but was able to keep her above water by holding her above me. I was convinced she wasn't going to the edge of the pool, she was going to calm down then get more exercise. Once I could touch again I tried to get her to calm down but she continued to fight. Then she screamed that she was going to throw up. I started moving us to the side of the pool but she was still fighting me and we ended up in the deep again. I was able to get us up enough and told Dwain to grab her. As I got her to the edge of the pool she vomited then immediately passed out in it.
Dwain grabbed her from me and pulled her the rest of the way out of the pool, into a sitting position, while I got out. He picked her up and brought her to a lounge chair.
When he put her down she was so pale she was blue, spitting, foaming and convulsing. I told Dwain to call 9-1-1 while I tried to get Kayleigh to talk to me. She couldn't answer any questions I was asking. I asked her questions like What is your name? How old are you? What is our dog's name?...things she should have been able to answer without thinking.
After what felt like hours but was realistically a few minutes Kayleigh began to come around. She got some color back in her face and started answering my questions.
When the firemen and paramedics arrived she was back to herself. She was arguing because she wanted to get back in the pool (answer was a big NO!) and saying she wanted to go to Taco Bell.

The kid scared several years off my life that day!

                So what is PH?  Pulmonary Hypertension is a rare, debilitating disease in which high pressure in the arteries of the lung can cause right heart failure. It can affect all ages, races, and is not gender specific.  Symptoms include shortness of breath; dizziness; fatigue; fainting; dry cough; swelling of hands, legs, abdomen, or ankles; and Raynaud’s phenomenon.  These symptoms are more pronounced as the disease progresses.  There is no cure for PH at this time. (PHAssociation.org)

 

                I was lucky enough to meet and spend some time with Kayleigh and her family earlier this year at a New Orleans book signing.  I brought a little surprise for Kayleigh, but she in turn surprised me with a PH Awareness package.  One of the things in the package that captured my attention was a little straw the size of a coffee stirrer that was taped to an instruction card.  The instructions were to put the straw into my mouth, pinch my nose, and try to breathe through the tiny straw to simulate the struggle PH patients face during an attack.  As I fought to breathe through that tiny straw, I felt such an overwhelming sense of empathy for the sufferers of this debilitating disease.  It was an eye-opening and sobering look into what Kayleigh, and the other sufferers of PH deal with far too often.

The Straw Test

 

                If you’re curious to know more about PH the resources are out there.  Often, PH goes undiagnosed or is misdiagnosed for quite some time with certain patients.  In Kayleigh’s case, she was told her issues stemmed from asthma, bronchitis, pneumonia, and allergies.  None of the medications given to treat these ailments worked, so the testing continued.  If you’d like to keep up with Kayleigh’s progress, I’m posting the link to her page.  PLEASE consider donating to the PH Association.  They are making great advances every day, and one day, maybe there will be that breakthrough that leads to a cure.  One extra fact, purple is the color for PH Awareness!

 

For more information about PH and/or donate to the cause, please visit:  www.phassociation.org

To keep up with Kayleigh, please visit: Kayleigh’s Phight Facebook Page

 

(DISCLAIMER: This post is for awareness purposes only.  It is not intended for use as a medical resource or for diagnosis purposes.  Please see a physician or health care provider if you have any questions or concerns about any health issues or concerns you may have.)

Talking about.... Post-traumatic Stress Disorder

My book, Yours Always, features two main characters that have survived serious traumas.  One suffers from PTSD while the other does not.  The character who doesn’t have PTSD hides from life because she’s afraid to tempt fate.  Status quo is her motto.  The character with PTSD lives life, but repeatedly gets knocked down as he tries to assimilate back every day life, post-combat.

Some who have read the book embrace it for all its truth: the good, the bad, and the very ugly.  However, the intensity of symptoms that some sufferers experience on a daily basis, and the sadness of some of the events that occur in the story may seem unrealistic or farfetched to some.  Unfortunately, these things are reality.  It happens, and it happens far too often. 

I wrote this story to help educate others, but doing it via a fictional story is sometimes difficult because I don’t want to bog readers down with facts, stats, and explanations.  The book is arranged to where readers first learn about Savannah, and then Fletcher’s story comes about later since hid his affliction from her.  This is common as many are embarrassed by the diagnosis, even though they shouldn’t be. 

The purpose of this post is to enlighten readers who are interested in learning more about this dreadful disorder.  PTSD is slowly garnering attention as a result of the long overdue acceptance of mental illness as less of a negative stigma.  People are getting better educated, and therefore are more understanding of the issues that some victims felt forced to hide for ages.  PTSD is most commonly associated with combat veterans, but can occur in anyone who has experienced a traumatic event or witnessed one.  This includes abuse victims, victims of violent crimes and can affect people of all ages.

Often, sufferers have no clue what is going on with them because the symptoms present themselves in very physical ways.  In other words, a person with PTSD does not have to be thinking of the traumatic event to get very real physical symptoms such as, but not limited to: sudden, rapid heart rate; sweating; extreme nausea; shakiness; headaches; fatigue; feeling faint; irritability; trouble concentrating; an intense feeling that something isn’t right or something bad will happen soon; and even blacking out. 

Many find themselves in doctors’ offices having multitude of tests run because the physical symptoms are so incredibly strong that they assume there has to be a medical issue causing them, but are perplexed when the results come back negative.  Other effects of PTSD can include insomnia; feelings of guilt, shame, or anger; reckless behavior; easily startled or frightened; hopelessness; feeling numb and/or not enjoying things that were once enjoyable; difficulty maintaining relationships; memory problems; inability to experience positive emotions; aggressive behavior; avoidance; and nightmares. (Mayo Clinic.org) In some severe cases, a condition develops known as Dissociative Identity Disorder. This involves the development of a split, multiple or splintered personality. Each personality has specific traits personal to them and rarely cross from one personality to another. This condition is a form of protection or coping mechanism for the individual.

The thing with PTSD is that it generally comes in waves and it’s generally due to being exposed to a “trigger.”  The problem is; triggers aren’t always very easy to identify.  Some are quite obvious, i.e. fireworks popping simulating battle sounds and triggering a response.  But let me give you a scenario that might not be as obvious.

 

Imagine fueling your vehicle at a gas station.  All is right with the world.  You’re on your way to your child’s school play, and are excited to see your precious little first grader sing and dance her heart out.  These are the thoughts in your head as you absentmindedly pump gas into your vehicle.  You don’t even notice the delivery truck pull into the stall next to you.  Out of nowhere you feel like you’re suffocating.  Anxiety attacks you.  Something is very wrong, but you don’t know what it is.  On edge, you scan the parking lot looking for signs of danger, but there is nothing out of the ordinary.  This makes you even more nervous.  You start to tremble, and every instinct is telling you to get away from there-NOW!  Your heart is pounding out of your chest, and you feel sick to your stomach.  Should you call an ambulance?  Are you having a heart attack?  Are you going to collapse right there by your car?  You manage to put the hose back into place, get into your car, and you now begin an internal debate as to whether you are capable of driving.  The delivery truck pulls away, and you continue to sit in your car.  Ever so slowly, the symptoms begin to lessen in intensity.  The urge to vomit is dissipating, but your stomach is still in knots.  The intense fear is being replaced with the urge to cry because you’re not sure you’re going to be able to attend your child’s recital because you’re so shaken up.  What caused this?  Why did those intense emotions hit you like a ton of bricks?  What if I told you it was the smell of the diesel coming from the delivery truck?  Or maybe the sound of the diesel engine?  Or even the vibration felt under your feet as the truck pulled into place?

The thing with PTSD triggers is that they can by anything: a sight, a sound, a taste, a smell, a touch, and they don’t have to be inherently related to the trauma itself.   For example, if someone experiences PTSD due to a past experience of being trapped in an elevator, it would be easy to assume that as long as that person takes the stairs from then on they’d be fine.  Wrong.  Triggers can come from the smell of a certain perfume a person also trapped in the elevator was wearing.  It could come from the smell of sweat from those around.  It could come from flicking florescent lights because the lights in the elevator flicked before it went dark.  Darkness could trigger symptoms.  A harmless bump from someone standing in the grocery store line behind you could be a trigger because you were rammed by other panicked people trying to get out.  A song could trigger it because it was playing in the elevator before the event.  This is just the tip of the iceberg.  To make things even more confusing, triggers can be completely unrelated to the event.

            The way it was explained to me is that the brain works to store memories much like people file folders away in filing cabinets.  During trauma, the brain sometimes doesn’t have time or the ability to file these experiences away in the right file, so it crams it into whatever file available.  This might be in the “Brushing Teeth” file, so whenever one goes to brush his/her teeth, the recall of that event occurs because it’s not filed in the right place.  I’m sure you can imagine how frustrating this can be to those who are unsure of their triggers and also understand why people with PTSD often avoid social situations.  Feeling desperate, helpless, jumbled, angry, uncertain, and anxious aren’t things people look forward to experiencing, so avoidance is very common.

THE STATS (Courtesy of ptsdunited.org and ptsdusa.org)

·         70% of people have experienced a traumatic experience and 20% of those will develop PTSD

·         Women are twice as likely to develop PTSD as men.

·         The number of people with PTSD in America is almost equal to the population of the state of Texas.

·         Of female military personnel who were sexually assaulted in ranks, 71% develop PTSD.

·         In 2009, 245 soldiers committed suicide, and on average, five a day attempt suicide.

·         One in three returning troops are diagnosed with PTSD, but less than 40% will seek help.

 

                There is hope, however.  PTSD is now becoming less taboo an issue and sufferers don’t have to hide in shame.  Help is available via many resources including, but not limited to counseling, medications, and therapy, especially those provided by organizations such as Wounded Warrior Project.  If you, or anyone you know, has symptoms, issues, or questions about PTSD I strongly encourage you to seek help, ask questions, and try to be supportive of those who suffer.

 

(Disclaimer:  This post not written as a means for medical diagnosis, and is merely for awareness purposes only.  Please consult with a mental health or medical professional for correct diagnosis and treatment.  Statistics used in this post are from the cited sources as obtained on July 8, 2015.)