Hope for a Better Future

I was diagnosed with Loeys-Dietz Syndrome in March of 2020 at 53 years old. My father died after his second open-heart surgery when he was just 32 years old.  Loeys-Dietz had not yet been identified in 1971, but the geneticist believes he suffered from the syndrome as well.

In June of 2020 I traveled to Birmingham, AL for open-heart surgery because the top cardio-thoracic surgeon in Greensville was not comfortable performing the procedure I needed. The folks at the university hospital did a great job and I made a full recovery in six weeks.

In early November, I had surgery to address nosebleeds and correct a deviated septum. Over the course of the next five weeks, I was admitted to hospital three more times to try to remedy the problematic artery at the back of my nasal passage.

Several weeks later I took another trip to the emergency room.  I had an infection in my blood stream.  When I was released, I had a PICC line and portable IV pumping antibiotics into me 24/7 for the next 6 weeks.

Between June of 2020 and March of 2021, I had:

·      Five hospital stays (ranging from two days to nine days)

·      Six surgeries (Four of them emergency)

·      Accumulated more than $1M in medical fees

LDS has required me to make a few lifestyle changes. I love roller coasters and other thrill rides, but I can no longer indulge in that pleasure.  I cannot participate in any contact sports.  That’s ok – I can still hike, swim, and kayak. I also had to give up pushups, sit ups, and pull ups (which doesn’t really hurt my feelings). I have seven aneurysms in various arteries.  Semi-annual imaging (CT scan, MRI, ultrasound) monitors them. I trust my medical team and know that when the time comes for surgical intervention, we will be ready.

Through all of this, the Loeys-Dietz Syndrome Foundation has been a tremendous resource for me and my family. The research they conduct and publish helps my doctors and me make informed decisions about my treatment. I have attended many webinars led by some of the world’s leading authorities on the condition.  Having these medical professionals available to answer my questions has been invaluable.  I also participate in support groups sponsored by the Foundation.  It is so reassuring to talk with others with the condition, to receive and offer support to those who have similar experiences. The work of the Loeys-Dietz Foundation today gives me hope for a better future for those impacted by this syndrome.