Why awareness of vEDS among medical professionals is vital

Posted April 30, 2020

daniel's story

One evening I went to bed. My wife made a comment to me that she had some stomach cramps. I told her I hoped she would feel better and I went to sleep.

Around 4:30 AM I woke up with this awful pain right below my ribs directly in the middle of my abdomen. I thought to myself, ‘great, we both ate something and now we have food poisoning’. I tried to go back to sleep. I kept rolling over and the pain was just sharp and persistent. I tried to push out gas, nothing was working. I went out to the couch so I wouldn’t wake up my wife.

I tried to sleep on the couch, with just excruciating pain. I was thinking while curled up in a ball almost in tears, how can I go to the hospital for food poisoning if my wife and kid are able to handle it? When did I become so weak? I put up with it for about 2 hours, it was almost time for me to get ready for work anyway. I told my wife that I thought I had food poisoning and I was going to stop in the Emergency Department (ED), before I went to work, for some medicine.

I went to the ED, they did the normal testing for belly pain; blood work, CT Scans, so on. Everything was looking good from blood work. At about 8:00 AM or so the nurse came in and told me so far everything is good they would try to get me out of here soon. Then another nurse came in and said, ‘Mr. Sperry, can you please remove your shirt? I need to put leads on you.’

I asked if everything was okay, and they said that the doctor saw something on my CT Scan and that I was going to be admitted. Shortly after that. Dr. Patel, (my hero) came in and said that he had seen an abdominal aortic aneurysm. It was not yet to the size that would require surgery clinically but there were some things making them talk about recommending it:

  1. The aneurysm was saccular, meaning that it was coming out of one side like a bad sidewall of a tire. 
  2. At 38 years old I should not have an aneurysm. 
  3. They also saw that each of my iliac arteries had an aneurysm. He said that he was going to consult with his partners and would get back to me.

He came back shortly after and said that they all agreed I need to have surgery. But now there was a new debate:

  1. He can do an open surgery; the fix is more permanent, but the surgery is invasive and there is a good chance that you can become impotent. 
  2. He can do endovascular surgery with a stent; this is noninvasive, less complicated, and will only take about 1.5 hours. This one, however, will require surveillance to make sure that it does not leak. He also stated since this is so uncommon they would want to do surveillance anyway, so I said option 2. He went back with his team and they concurred.

So, it was now about 12:00 PM and everything was happening so fast. I got prepped and went into surgery. I kissed my wife, told her I loved her, and I would see her in 2 hours. I kind of remember the walk from the room to the operating room. I went into surgery. I remember waking up and seeing my son, I also remember thinking how did my wife get to my house, pick up my son, and get back? We live 45 minutes away. It was later that I found out that my 1.5-hour surgery took 9 hours. 

When the doctors went in, they found out really quickly what it is like to work on the arteries of someone with vascular Ehlers-Danlos syndrome (vEDS). They found out that my arteries are very fragile, the minute they touched an artery it would balloon out. They found out this while trying to remove a clot from my leg. They were not able to find a pulse in my foot and then dragged a balloon through my artery not realizing the serious complications of vEDS. After hours of repairing the damage, the doctors got a pulse and I was brought to recovery. I was in ICU for one night and moved to a regular unit the next day. I was impressed by the level of care and compassion in the ICU. I was released and went home.

A few days went by and I was getting ready for a follow-up appointment with my cardiologist. While I was getting ready I got a really bad pain in my leg. I walked out of the bathroom and my wife asked what was wrong. She said that I was as white as a ghost and I was dripping in sweat. I said ‘I don’t know I have this really bad pain in my leg’. I sat down on the chair and my toes started to tingle like my toes were falling asleep. We got in the car, I put my leg up and the tingle went away. I called my doctor and told them what happened. I asked if I should go to the cardiologist or to the ED. I went to the ED and they did a CT of my leg. They found a giant aneurysm. It was time for another surgery.

The doctor admitted that there was just too much damage caused by the first surgery. So, they went in and did a coil embolization on an artery in my leg which essentially killed off that artery.  Since then I have had no issue, scans have all come back clean.  I am happy to be here with my friends and family and now that I know, I am confident that I will be around for a long time.

Tags: , , , ,

Categorized in: