I was a captain in the Army at Fort Huachuca, Arizona in December of 1984. My parents had come to visit, so I was sleeping on the couch. In the middle of the night, I awoke to go to the bathroom. The next thing I knew, I was pulling myself up off the hallway floor. That was crazy, I had fallen asleep walking to the bathroom.
In January I played intramural basketball with my unit. I ran as fast as I could down court to my position and stopped. I collapsed! My team thought the other player had decked me. I came to and was set on the bench. During the second half, our coach put me back in the game. On the first play I ran down court as fast as I could to my position and stopped. Again I hit the ground. This time the ambulance carried me out and delivered me to the ER. They looked me over and ran some lab tests, but didn’t come to any conclusions so they let me go home.
The next week was another intramural game. Just hit the replay button. I ran as fast as I could down the court to my position, stopped, collapsed, and left in the back of an ambulance for the ER. This time, however, they weren’t sending me home. The internal medicine doctor offered me a preliminary diagnosis of Long QT Syndrome. Up to this point Long QT was a rather obscure condition, but two prominent medical journals, Circulation and The New England Journal of Medicine, had both published articles that month on this heart abnormality. Coincidence that my episodes began the same month these articles were published? Some may say so, but I see the hand of God directing my life.
The army owned me so I couldn’t just check out of the hospital and go home. They shipped me off to William Beaumont Medical Center at Fort Bliss in El Paso, Texas. It was a teaching hospital and I was a new item. I don’t remember all the tests they ran on me, but I do remember the daily rounds. There were always several layers of doctors in training and I would tell my story over and over. I was happy to do this because I wanted them to be able to properly diagnose and treat the next long QT patient they encountered.
The cardiac floor became my temporary home. My daily routine included wandering down to the cardiac floor’s community area to play spades and visit with my fellow patients. Your typical cardiac patients at that time were men over 65 that weren’t moving too fast. As a 26 year old, physically fit woman, I was a bit of a novelty. With Long QT you look and feel perfectly normal, except when you’re unconscious. Our floor was in a circle so you could walk laps. I would nearly fly to release some of the stress. The old men would encourage me by saying, “You’re doing great! You’re going to get out of her soon” as they slowly placed one foot in front of the other in their efforts to recover from open heart surgery.
I was a long way from home, but my sister-in-law’s family lived in El Paso and did come to visit on occasion. Towards the end of my stay, the hospital let me check out for a couple of afternoons. I went hiking. And I did some clothes shopping since my wardrobe primarily consisted of hospital pajamas.
It took them 21 days to figure out what to do with me. Fortunately the army said I could stay on active duty. I did have to put aside my aspiration of attending air borne school to learn to parachute out of airplanes. I could deal with that. Then they told me I would need to take a pill, a beta blocker, once a day for the rest of my life. I was devastated! That must have been the moment when I realized there was something wrong with me and I would have to alter my life. The bigger pill I needed to swallow was admitting that I wasn’t invincible.
That idea of being invincible is a myth, everyone has something wrong with them. Sometimes our imperfections or weaknesses are visible to ourselves and others, and sometimes not. Now I laugh at myself for balking at such a simple fix, for such a severe condition. For me it is akin to taking a daily multiple vitamin. Unfortunately this is not true for everyone, as beta blockers can be very debilitating. Sometimes medication is not enough and more invasive measures are required. Sadly, there are those who are not even given the choice of receiving a treatment, as this silent killer can claim its victims before they even know there is something wrong.
There were several instances in my childhood when Long QT Syndrome’s arm of death should have taken me. I believe I had guardian angels watching over me, and one of the reasons I am still here is to help others learn to live with this condition. Over the years I have made a few endeavors of support, now I see this blog as a platform to reach those with Long QT and the community as a whole. I don’t have a perfect life, there was only one who did, but I am happy with the road I travel. No two people are going to face the same circumstances with Long QT, but we can apply sound principles to different situations.
This post is the first of my series, Living with Long QT Syndrome. The next post is entitled, What is Long QT Syndrome?, and is scheduled for 8 June. I hope you will join me for the series and suggest topics of interest to you.