Tag Archives: Marfan Syndrome

Tackling WPW – Outtakes


Here are some of the outtakes, or bloopers if you will, from the Tackling WPW blog.  I would have loved to have them in the original post, but it just made things too long.  Some are funny and some are meaningless!  Enjoy!

Travel and Team

Arielle’s cardiologist, Dr. Black and his staff were instrumental in getting everything scheduled so that Arielle could have everything handled in one trip. You see, the electro-physiologist, Dr. David Bush was in San Antonio, as is Dr. Black. And we are in El Paso. Dr. Black is the cardiologist for Fort Bliss and has two regular appointment days monthly in El Paso.

The nail that pierced my tire.

The date was set and the travel determined. Arielle and I piled in the Suburban and hit the road. San Antonio is about eight hours from El Paso.   The trip was uneventful with the exception of a nail in my tire that had to be repaired before even leaving El Paso. Did I assign that as an omen of things to come? Nope. This was literally a trip of a lifetime. This trip would change Arielle’s life forever. She would go from having a possible life threatening syndrome and ending her sports career to being free to soar to heights uncharted on the other side of this procedure. I was elated and anxious.

While Arielle was in San Antonio, her high school volleyball team was competing in a pre-season tournament in Corpus Christi TX. They all knew of Arielle’s diagnosis as she was unable to practice with the team for the two weeks leading up to the procedure. They really missed her on the court. To see Arielle’s volleyball skills, check out this video.

That’s Arielle’s head

When we arrived at Six Flags we were both a little perplexed at our behavior. Since both Arielle and I are self-professed roller-coaster junkies, why are we not riding?!? Truth be told, we didn’t trust her heart to hold up. The procedure was looming and we were now well aware that she was at moderate risk with the WPW. We were afraid that she would be scared to death. We walked for a while in 100+ degree heat and then finally settled on the Poltergeist as the first ride. It was a good ice breaker. Arielle realized that her heart would hold up primarily because she was bored with the ride. The Poltergeist had no real thrill factor for her.

That set us off on a quest. We were looking for the ride that would deliver the thrill. We were in the hunt. Since it was a Thursday, the lines for the rides were fairly reasonable. So we hit it–hard.   We did Superman, Goliath, Boomerang, RoadRunner, the Iron Rattler, the Sky Screamer and then finally Batman. The ultimate test of a roller-coaster’s thrill for us is how you look on the picture that is taken and what exclamations or screams escape your lips as you ride!   Arielle smiled on all of the ride pics! I did well on all but one. The Iron Rattler was on for the ages! That one almost had me in need of a motion sickness pill. It was a great time and it kept our minds off of the WPW procedure.

After the park, we went and had a huge meal at Pappadeaux’s . This was going to be Arielle’s last meal before her procedure and I wanted to make it memorable. We had everything from appetizers to dessert. Arielle had her three favorite things, lobster, shrimp and pasta. She had the Lobster Mac & Cheese appetizer and the shrimp pasta entree.   Definitely memorable!

Pre-procedure antics
Pre-procedure antics

Ghetto Diaper

In the midst of this flurry of activity, Arielle feels the need to go to the bathroom. Since the procedure required entry in her groin, she couldn’t sit up and go to the bathroom the regular way, so Nurse Jennifer brought her a bed pan to use. It is very awkward to use a bedpan when you have use of all your faculties, but it is even more so when you are partially anesthetized and required to lay flat on your back! Arielle had no success with the bedpan even after 3 tries! The bladder was just not cooperating.

Arielle was upset because she really felt the need to go. She said It was at the point where her sides were hurting. But, being the typical teenager, she didn’t want to pee in the bed. Nurse Jennifer told her it was fine to pee in the bed that they would clean it up, but Arielle was not EVEN having that! Then Nurse Jennifer offered a diaper since she didn’t want to wet the bed. I interjected and opted for the diaper.

So Arielle was getting a diaper…NOT! Nurse Jennifer came back and said that they did not have diapers big enough for Arielle. She did offer to fashion a “ghetto diaper” out of the moisture pads that they place under you to protect the bedding. She was just about to do that when the crew came in to take Arielle back downstairs. I am not sure if Arielle was relieved to not get the ghetto diaper or not because she still really had to go!

Nurse Jennifer let Nurse Keri know about Arielle’s urinary dilemma and Nurse Keri said she would handle it downstairs. By “handle it” she meant put in a Foley catheter. When Nurse Keri came to get me from the waiting area she told me that Arielle REALLY did have to go badly. She utilized the catheter quite nicely.  And by nicely I mean filling the bag to near capacity!

Afterwards when Arielle woke up, she checked herself and realized that she had the catheter in and said “Mom! There is something in my V-Jay-Jay!” I explained to her that it is not in her V-Jay-Jay as she so eloquently put it, but it was what was helping her to go to the bathroom in lieu of the ghetto diaper!

Getting an appointment

A T-shirt at Six Flags

Now I had to get an appointment at the clinic.

I called the Appointment services for Fort Bliss and was offered an appointment on September 9th. Are you kidding me?!? Unacceptable. The appointment rep told me to call back on Tuesday 8/25 to see if I can get an appointment for Wednesday. So I did.

I called the appointment line Tuesday 8/25 the minute they opened at 6:45am. Again I was offered September 9th.  Again I said unacceptable. I told the appointment rep that I needed an appointment today, 8/25 or tomorrow 8/26. He looked had me on the phone for 7 minutes looking for an appointment. I finally got an appointment for 8:40am on 8/26. It was with the same provider that started us on this journey. AND it was earlier than it would have been with Dr. Black! Win-Win!  I knew that the provider would have no problem doing what was required to get the EKG to Dr. Black.  She was VERY familiar with Arielle and her story.  She almost had a vested interest in getting her cleared for sports.

When we met with the provider, we gave an update of the procedure.  Then she put in the order to get an EKG done and to have it faxed to Dr. Bush. We know the EKG routine now and it’s not as scary as it was on the front side of this situation. At first we were hoping that nothing was found and we are still hoping that nothing is found, but for a very different reason this time. Finding nothing means everything this time.

We waited and waited to be called to the EKG room. Our nerves were still on edge because of what happened while in San Antonio. The EKG was done and we left. Both Arielle and I were still uneasy, because it just seemed like the med tech didn’t do the EKG right. She just did not know what was riding on this EKG. One slip up and we are in trouble.

Now we just had to wait for the final review by Dr. Bush. I contacted the office to make sure that the EKG fax had been received. But Dr. Bush would not read the fax on Wednesday. He was in Laredo doing screenings. He would be back in the office on Thursday to read the EKG. So we had to wait ONE More Day.

The bad thing about waiting the one day means that she would not be quite ready to play in the volleyball tourney in Wofford TX, the weekend of August 28th – 29th. She was allowed to attend the tourney because her discharge paperwork said that she was able to practice but not released to compete. So I am waiting to get the clearance so I can get it to the trainer, so he can get it to the coach, so she can take the court with the team on Friday morning. Talk about cutting it close!

Clearance Day

Once Arielle’s official clearance was received from Dr. Bush and sent to the trainer, it was discovered that Arielle had not turned in her physical form. This meant that she would not get clearance from the trainer to compete until it was turned in. But she is already in Frenship suited up and ready to go! Unaware of any of this, I am driving my son, Benjamin, to school when my cell phone begins to go crazy. First it’s a text from the trainer requesting the physical. I have it so I will email it. Then I get a call from the Coach. OK I relay the same message. I will email it in 30 minutes. Then she says, “but we are warming up right now.” That’s when I realize that they are on Central Standard Time in Lubbock and not Mountain Time, thus 1 hour ahead. Oh Snap!

Then I get a call from the trainer. I tell him that I am heading that way and can bring the physical by his office on my way to work. “OK , that’s fine.” And then I panic! Do I still have the physical in my purse or did I leave it at the office?!? I commence to praying, because I cannot stop and check my purse. Oh boy…

I arrive at Burges, disobey the traffic monitor and barrel through the parking lot to get to the trainer. He is outside waiting for me! Thank God, I find the physical in my purse. We run in the office and get the paperwork cranking. While I am signing the physical, he is on his phone. He is literally dialing the coach as I write. I finish signing and he says into the phone “OK Coach, she’s a go!” It is 7:55am here and 8:55am there; 5 minutes before game-time! Crisis averted, yet again! He gets her information updated on the system, gives me Arielle’s official clearance paper and I am gone. And yes the traffic monitor is still there, giving me dirty looks…oh well…

From Routine to OMG!



Life shifts can happen at any time. The key is to have a plan of attack no matter what the challenge.

May 8, 2015    Arielle has a routine primary care appointment to get a referral for the podiatrist. During the routine evaluation, the primary care provider (PCP) begins to think that Arielle is exhibiting signs of Marfan Syndrome. Marfan syndrome is what caused Isaiah Austin, the Baylor basketball star, to withdraw from the NBA draft in 2014.   The PCP requests some tests: x-rays for spinal deformity, genetics referral, and an EKG to check for the cardiac component of Marfan Syndrome. The appointment ends and life goes on.

Shortly after Arielle’s EKG, I receive a call from the Pediatric department to set up an appointment with the pediatric cardiologist. I am instantly concerned because I think of all the things going on in the next few weeks. Arielle is the TX-5A Region 1 Champ in both the Long and Triple jump and is heading to Austin for the first time ever to compete in the State track meet. She has goals and plans for her future in athletics at the college level. Coaches are jockeying for position to get her attention in both volleyball and track. I didn’t want her plans for athletics to be derailed by Marfan like Isaiah’s. I set the appointment and decided to wait to tell Arielle later so that she wouldn’t worry.

Arielle’s track season takes off like a shot. She goes to state and takes 2nd place in the Triple Jump. She is invited to compete in the Great Southwest Outdoor Track & Field Meet in June. She qualifies to go to the USATF World Youth Trials in Chicago for a chance to compete for Team USA in the IAAF World Youth Championships. She is oblivious to the fact that she has a cardiac appointment in a month.

The appointment weighs on me heavily, however. What if she has the cardiac component of Marfan Syndrome? With that diagnosis her entire sports career is over. It’s high risk for sudden death that makes her untouchable by any D-1 school athletic program. No track, no volleyball, no nothing. How do you tell your child that she can no longer compete collegiately as she had planned? It is sheer agony.

Every time I get up the nerve to tell Arielle about this cardiology appointment some other great event happens. Right after she qualifies for the youth trials in track, she receives an email saying that she made the high performance volleyball team for the region. It is quite an honor to make this team. She’s excited and I am deflated because now is still not a good time to tell her.

While preparing for the Border championships for summer track, Arielle is notified that she is El Paso Female Track athlete of the year! It’s another reason to be excited and STILL not a good time to tell her about the cardiology appointment.

Finally, I tell Arielle about her cardiologist appointment once we return from World Youth Trials on July 2, 2015. The appointment with the cardiologist is July 9, 2015. She instantly asks if something is wrong with her heart. I say no, that they just want to be sure. Being ever the optimist, I even scheduled her school sports physical for the same day. I was so sure the cardiologist wasn’t going to find anything and she would be cleared on her physical to start volleyball practices.

That was my plan. The universe, however, was not cooperating.

July 9, 2015. Appointment Day we go to Arielle’s appointment and the first thing they do is take another EKG for Dr. Black, the cardiologist. And we wait…and silently pray…and awkwardly try to act like everything is fine. Dr. Black comes in and tells us that Arielle does not have Marfan’s. Whew! Then comes the but…but she does have Wolff-Parkinson-White Syndrome (WPW). What in the world is that? He immediately calls us to a place of calm and begins to explain what WPW is and what it entails.

WPW is a syndrome where an alternate pathway develops in the heart in utero.  Normally, the electricity goes through one designated pathway and is slowed down prior to entering the different chambers of the heart, so that the heart pumps properly. This alternate pathway allows the electricity to pass through the heart without being slowed down at all. This unchecked electricity can cause irregular heartbeat, atrial fibrillation, and sudden death with high intensity cardiac events…like sports!

WHAT?!? Arielle and I both begin to pepper Dr. Black with information and questions. She has USATF Junior Olympic Nationals coming up, what does WPW mean for that? Volleyball season is coming up, how long will she be out of commission.  What about this, how does that play out with that? I am feeling frantic and so is Arielle.

Dr. Black immediately reassures us that WPW is totally fixable and that she should be able to continue with her sports career once it is fixed. But…

But?!? Another but. But what? I did not realize that I was holding my breath until I started feeling light-headed. This was a lot to take and we had plans and finances tied up in Arielle going to Jacksonville to compete in the Junior Olympic Nationals. This was her year of redemption etc. However, Arielle’s health was most important. We both knew that and wanted to convey that to Dr. Black.

Dr. Black listened patiently to our concerns and told us that Arielle was not allowed to do any competitive athletics until her heart diagnostics were confirmed. There was a possibility that with high intensity work-outs that the alternate pathway could possibly automatically shut itself down once the heart rate was raised to 150+ beats per minute. But in order to determine that Arielle needed to get a Holter monitor and do a stress test to get the diagnostics.

A plan is then mapped out a plan to get things moving as quickly as possible in light of our plans for Jacksonville. He needed Arielle to wear a Holter monitor to track her heartbeat for 24 hours. Once the diagnostics were received he would know how to proceed. If the alternate pathway shut itself down during high intensity workouts, then she is out of the woods and can continue as normal. That was definitely my hope because I really want her to be OK and to not have her season derailed.

No such luck. Arielle wore the monitor during two track practices, played Just Dance on X-Box, and went roller skating. The results showed that her heart rate during exertion got up to 170+ beats per minute and the pathway did not shut itself down. So we had to prepare for the next procedure which was an electro-physiology study and cardiac ablation. It is not open heart surgery but anything dealing with the heart is always of major concern.

Arielle and I had a talk in light of this new development and decided that she would compete in Junior Olympic Nationals in spite of the diagnosis. The thought process was that she had competed this long with WPW not knowing that she had it and this was her last track event of the season. We would finish the season and then deal with the WPW.

This response was made not from a place of panic but it was calmly discussed and all of the possibilities analyzed. From an early age in sports, we have always taught Arielle to know what her priorities are before entering into any venture. This makes the decision making process more streamlined and easy to navigate. If you don’t know the priority, then any challenge can likely throw you off course. We know that “track is life” and we were going to see this great season through to the end.

While at the Junior Olympic Nationals, it was very scary for me to sit and watch her compete. I generally enjoy watching Arielle get all intense with the competition. I generally encourage her to push herself to her very limits. This time, though, it was a little different. Although I wanted her to make All-American and do really well, I had this growing apprehension of “What if…?” I watched her compete and put on a brave face, but it was one of the hardest things for me to ever do so far. When she finished both her events as an All-American, in spite of the WPW diagnosis, I could not have been prouder.

All-American at Junior Olympic Nationals were the final feathers in a great season’s cap. Arielle finished the 2015 track season as:

  • EPISD District Record Holder (Varsity) in Triple Jump (38’11.5”)
  • 5-A Region 1 Champion in Long Jump (18’7”) PR
  • 5-A Region 1 Champion Triple Jump (40’ 6”) PR and Burges High School record
  • TX State Silver Medalist in Triple Jump (40’ 3.75”)
  • Great Southwest Outdoor Triple-Jump 6th place finisher 2015
  • El Paso Times Female Track Athlete of the Year 2015
  • USATF World Youth Trials Competitor 2015
  • USATF Border Champion in Long Jump 2015 (5.57) Border Record for 15-16
  • USATF Border Champion in Triple Jump 2015 (11.93)Border Record for 15-16
  • USATF Junior Olympic Nationals All-American Long Jump 2015
  • USATF Junior Olympic Nationals All-American Triple Jump. 2015
  • Milesplit TX Female Track Athlete of the Year Nominee 2015

Now on to deal with this WPW.