Attitude Check

How do you treat Long QT Syndrome?

The word treatment has a couple of definitions.  My initial answer to this question described medical therapies given to someone with this illness.  A medical treatment plan really doesn’t matter, though, if you haven’t first addressed your behavioral treatment of Long QT Syndrome. How do you deal with Long QT?  What role does it play in your life?   The behavioral form of treatment doesn’t just apply to the person with the disease. Spouses, children, parents, siblings, and friends also live with Long QT. They may not take the medicine or have surgery, but they will be seriously impacted by the disease.

Let’s try an analogy of how you treat Long QT with how you may treat your dog. I’ve defined three categories of dog owners.

  1. There are people who center their lives around their dogs.  Every activity, conversation, friendship, and thought are controlled by the dog.
  2. Other dog owners love their dogs and make them a part of their lives. They are not consumed by their pets, but control their involvement with their dogs.
  3. Some people have dogs, and give them some attention.  Family and friends may need to care for the dogs at times, or on occasion the animals might fend for themselves.
Our dog Filson. He lived to age 17. A very loyal, protective friend.

I’m not a psychologist, so all this food for thought has been cooked up by me.  How a person approaches Long QT can be dependent on a variety of factors, such as her religious beliefs, personality, or level of knowledge and experience with the condition. It’s not really fair to judge another individual’s response to Long QT, as your conclusion would be derived through your own personal filters.

What if we were to apply these categories to dealing with Long QT?

When I was initially diagnosed, I resided in the first category.  It was like owning a dog for the first time, and trying to be a good master.  Long QT forced me into a new normal.  I had to take medicine every day, though up to that point in my life, I didn’t even take a daily vitamin. I loved swimming, but that didn’t seem safe.  Was I going to lose my job? I needed to tell my family so they could be evaluated for Long QT. How could I learn more about this disease? Long QT became the center of my world.


I now live in the middle group.  I go to the doctor annually, take my medication daily (well, most of the time), avoid certain activities, and usually forget I even have a heart problem.

Me, living my life.

My kids would probably say that I still fit into the first category. I nagged, I mean reminded them to take their medication, occasionally made them wear monitors with wires all over their chest to school, restricted them from certain activities, and sat on the side lines intently focused on their every move.  We’ll see how they handle it, when they have kids :).

Since my kids were all diagnosed at birth, their experience has been different from mine. (I’m refraining from comparing them to puppies, or I will be in trouble.)  When they were young children they were oblivious to their heart problem, because Jeff and I managed their care. With time they learned more about Long QT and were able to assume greater responsibility for their own treatment. At different times in their lives, they approached their Long QT with different attitudes. They’ll have to be the judge of where they fit now in the spectrum.

Over the years I have read numerous stories about people with Long QT Syndrome.  Often I weep at their tragic introduction to it. I read of a father who lost his wife and one of their children to Long QT, before he even knew what it was.  Then he is told that one of his other children carries this silent killer.  I can imagine his response.  I would want to put that child in a bubble.  Every time I saw him sleeping, I would be checking to see if he was breathing.

I have a  cousin whose adult child decided not to take medication anymore.  He was tired of this disease.  After a couple of years he called his mother for the doctor’s number. She figured he had a cardiac event, which led him to change his current approach to Long QT.attitude

How you approach living with Long QT is not entirely a personal thing, it does affect others. Your family and friends care about you, and want to help.  Involve them in this part of your life.  Careless treatment of this disease could result in your death, leaving behind grieving, and possibly guilt ridden, family and friends.

Think about your attitude towards living with Long QT Syndrome.  Are you satisfied with your attitude?  Could it use a little tweaking?  Does it need a complete overhaul?  Maybe it’s worth discussing with your family.

Join me again on July 6 for another conversation about Long QT Syndrome.  Please add your comments and questions. What would you like to discuss?

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