Today I read a story that re-sparked anger which never truly resolved. This story reminded me of my own but with a far more tragic ending. Not only does it leave me feeling grateful but also furious that such a terrible thing had to happen to such a young guy with so much promise…or to anyone at all for that matter.
I didn’t know Dillon. He was a year older but attended the same high school. We had a mutual friend and through him I think I met Dillon maybe twice, sharing only a few words. He was a very popular guy – clearly well liked.
I had heard years later that something happened to him and that he was in some kind of coma. I never knew anything more than that until today when I learned of his passing ten years after that fateful event. This story was written by his sister and I read it HERE…
On April 28th, 2001 Dillon, a very active young adult and avid sports fan, spent a normal day with friends. They played basketball, grilled burgers, and watched a play-off game between the Bucks and the Magic. When the Bucks/Magic game went into overtime that night, Dillon collapsed. His friends thought he was choking or perhaps having a seizure. His friend Tony attempted CPR in an effort to help Dillon while Bobby called 911. Tony asked, “Dillon, are you okay?” Dillon replied with, “No.” That was the last word he ever spoke.
When the paramedics arrived they shocked Dillon 11 times to try to revive him. He had gone for a period of up to one half hour without oxygen but was successfully resuscitated. He was stabilized and put on a ventilator in the intensive care unit. My parents were called.
When this event took place I was studying in Argentina as an undergraduate student. My parents called me to tell me that something terrible had happened. I first thought that Mittens, the cat, had died but then my thoughts turned to the possibility that it could be my grandmother. Never could I imagine that the news was about my young, vibrant, full-of-life brother Dillon. Upon hearing the news I cried uncontrollably for what felt like forever. After a horrendous evening of trying to find a way back to the U.S., I boarded a bus which took me to an airport about three hours away. I then took a plane to Buenos Aires, a bus from the national airport to the international airport, and then finally I took one more plane that would allow me to arrive in Racine, Wisconsin, where Dillon was. The trip lasted for 24 long, agonizing hours.
My brother Sean and his wife Tiffany picked me up from the airport in Chicago and brought me straight to the hospital in Racine. Once there, I found my father pacing and crying in the parking lot. After holding each other for a short while, my father brought me to the ICU where I found my mother and Dillon’s girlfriend Mame. My father led me into Dillon’s room where I witnessed my big, strong brother relying on tubes and machinery for life. I will never forget that moment and how the impossible became a cold, tortuous reality that my family would endure for the next 10 years, three months and two weeks.
Dillon was soon weaned off of a ventilator. He was given an EKG that his regular physician should have ordered weeks before when Dillon went to him and complained of a racing heart. The EKG showed that Dillon had a very rare congenital heart defect called Wolff Parkinson White. A simple ablation could remedy such a condition if it is detected before one suffers the horrific symptom of sudden death. Dillon’s doctor had told him not to worry about the symptoms he was feeling and to try to drink less coffee.
After a ten-year struggle, last week my family finally let Dillon go. He passed away the evening of August 10th, 2011. In his honor, we are requesting that Dillon’s friends and relatives donate to “Screens for Teens.” We know that a simple EKG would have saved Dillon’s life and allowed him to marry the love of his life, have the children he always wanted, and permitted him to keep on laughing, playing and loving as he did every day until age 27 when this horrible event took place. We hope to save other families from experiencing this tremendous sadness through these donations.
I have spoken in the past about my cardiac issues and history. In brief, I will summarize.
Beginning in my early 20s, I began having the feeling that my heart was racing. I would lose breath and a couple of times, I fainted. My arms would tingle and I felt a sense of doom. Unfortunately, these symptoms mimic a panic attack and for over a decade, that is what they insisted I was dealing with. One particular time in the ER the nurse had to check my heart rate several times because it was so fast. She kept asking me if I was on anything. I certainly was not. By that point I had even quit coffee and soda – anything to stop the symptoms (also quit smoking cigarettes and pot). I was clean as a whistle yet my heart was beating like a rabid drum. Each time Invisited my Dr. or the ER, I was patted on the head, told it was anxiety and given a xanax. I was miserable and eventually I did INDEED develop panic and anxiety disorder.
At age 28 I was home doing the dishes and felt a familiar flip flop in my chest. Only this time directly after the flip flop my heart started beating too fast to count. I took a xanax, tried all the anti-attack tricks but nothing helped. I decided to drive myself to the ER (stupid, don’t EVER do this…get a ride or call 911 – it is just not worth the risk, I could have easily passed out). When I got to the hospital my heart rate was between 170-190ish. They got me into a room and hooked up right away. I had at least one – usually 2 – nurses in my room with me the whole time. They took several tests, tried different vagel maneuvers but there was no answer as to what or why this was happening. This rate sustained for over 4 hours. At one point my BP dropped to 50/30 and the look on the RN’s face scared thee shit outta me. I really truly honestly thought I was about to die. It was the single worst moment of my life and I have had a number of horrible moments.
Finally the Dr. decided to give me a beta blocker and within 20 minutes my heart started to slow. It felt as though I had been pumping iron for a week straight. I was SO sore. I was sent home wearing a holter monitor and told to see the cardiologist the following Monday. Within 15 minutes of my appointment, she told me I had SVT (supra-ventricular tachycardia). She insisted it was benign, though scary. She said I should remain on the beta blockers indefinitely. She ordered more tests which all came back normal. She said many people with SVT and similar arrhythmias are misdiagnosed with anxiety/panic because the symptoms are so similar. But after 10+ years, wouldn’t you think SOMEone would listen??
It took me a LONG time to come to terms with this condition. I became pregnant 2 weeks after my diagnosis which made things harder (with the hormones) but after MANY calls to the cardiologist, a lot of reading and getting used to the med – I was able to eventually calm down. By this time I really DID have anxiety and to this day it has not gone away.
This past week I went back to the cardiologist – an EP (electro-physiologist) – for a check up because my flip flops (AKA PVCs) have increased lately. She was able to reassure me a bit and I have 2 tests I will be taking this Monday – an echocardiogram (I had one about 7 years ago) and a 15 minute EKG (never have had one of these, only regular EKGs). If those are both normal, which she seems to think they will be, she says I will be good to go and perhaps will just need to take more BB when symptoms are worse. She said it is a quality of life issue but not to worry about sudden death.
Ever since my diagnosis, I have had this OCD fear or sudden death. Learning about SVT online had its bad side. I also learned of a bunch of other things I thought I might have – things like WPW, the syndrome which struck Dillon. My uncle also had WPW but very luckily was able to have it ablated before something happened. I have not had any fears about cancer or illnesses – pretty much just dropping dead with no warning. I have gotten some control over my fear, but it is always underlying somewhere in there.
Anyway, I still have trouble trusting medical professionals. And the phrase ‘you’re fine’ is VERY difficult to believe. Years were wasted being worried and feeling like shit. Who knows if being untreated for so long put extra stress on my heart. I don’t think I will ever get over being ignored for so long.
Yet, I am grateful. To see what happened to Dillon is heartbreaking and eye opening. We need to live our lives while we have them. We need to stand up for our health. And we need to be grateful for every moment we have.
Please consider giving to this very necessary and worthwhile cause – Heart Screens for Teens – what a wonderful idea and organization.
I want to extend my deepest sympathies to Dillon’s family and friends. Their loss and pain is unimaginable to me. What they have been through this past decade – my heart goes out to them all.