Another study

In our continuing quest to try to find answers about Alexander’s loss, we’re going to participate in a second study.  The second study is through the Sudden Death Genomics Laboratory at the Mayo Clinic.  Dr. Ackerman and his staff research several heritable cardiovascular diseases.  The Long QT Syndrome the clinic conducts is one of the studies mentioned in our SUDC binder.  While Alexander’s autopsy report didn’t show anything wrong with his heart, we want to explore every possibility to find answers.

As part of our possible participation, the clinic wants us both to have an EKG done.  I had my done yesterday.  Why is nothing ever simple?  I had another appointment prior to the EKG appointment.  Because the first appointment ran late, I arrived at my doctor’s appointment late. When I arrived at the doc’s office, the receptionist told me I was late so I missed my appointment.  She said I could wait but the next opening wasn’t for another hour.

Yes, I was late, but my visit would have taken 5, 10 minutes top and as I looked around the empty waiting room, I just couldn’t believe she was telling me I had to wait an hour.  Was the office scheduling so tight that it didn’t allow for someone being late.

This just compounded the bad day I was already having so I decided to run errands for an hour rather than wait.  To ensure I didn’t miss another appointment, I arrived 10 minutes early.  At 10 minutes past my appointment time, I wondered if I should go to the desk and tell them since the doctor was late for my appointment, I was leaving.  Just then they call me back.

As I waiting for the doctor to enter the room, I started to tear up thinking about why I was there.  I don’t visit the primary care doc often except for the occasional times I’ve gotten a flu shot or have had need for antibiotics.  As I was explaining to him why I needed the EKG, I broke down and could barely talk through my tears.

The doc said the EKG was fine aside from a small spot that you may see at some times but not others.  I had some problems with increased heart rate in the past but the cardiologist didn’t seem to think it was of concern.  We’ll see if they notice anything at the Mayo Clinic.  Now, I just need to get Dan to get his EKG done so I can complete our file.

Lately, I’m finding with every new person I have to share our story, it feels just as if it happened yesterday with all the same very raw emotions.  The same searing pain through my heart.

I’m missing Alexander so much.

Alexander’s Run Update

Dan has mapped out a potential route and is going to walk it with a couple of friends tomorrow.

3 responses to “Another study

  1. I imagine that as hard as it was, you won’t regret your participation in this study that might help other parents and children in the future. Will you be coming to the Mayo Clinic? It’s in my great (and cold) state of MN, though a few hours from us.

    Glad that you’re doing so much to remember Alexander!

  2. We just had the Long QT test done on Evan back in April. His was negative. I wish you the best of luck in your search. I know that a positive or negative result will bring mixed emotions, but I pray that someday you will have answers, as well as all of us SUDC parents. I know that we all need closure! Hugs to you!


    • Hi Daven,

      Did you actually see Dr. Ackerman or did you just send in Evan’s medical records. I’ve sent them all of Alexander’s medical records and will send our EKGs once Dan gets his done. When I was talking to someone in the clinic, she mentioned something about coming to Mayo. I’m sure Alexander will be negative for Long QT but I feel like I have to keep searching for answers.

      I look forward to Friday’s announcement about how much you raised.



Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s