Name: Danielle Haines
Age at time of Dissection: 32
Type of Dissection: Descending
Date of Aortic Dissection: 5 May 2013
Tell Us Your Story:
When I went to my local ER at the end of April, I thought I was having a panic attack. It had happened before, my chest would start to ache and hurt, and I would go in and they would give me a shot to help me relax, then send me home.
This time was different, because when Dr. Turner realized that I have Marfan’s Syndrome, he asked me to get x-rays. When those came back, he was worried, and asked me to get a CT scan. I was worried at that point, because I know doctors don’t just send patients out for extra tests “just because.”
Come to find out, I had two major dissections in my descending aorta–one that was almost the size of a soda can. He immediately told me that I had to have emergency surgery, but there simply wasn’t anyone qualified in my state (Kansas) who could perform the operation. It took them a long time to get things in order, because none of the surgeons locally wanted to take my case, because everybody was certain I was going to die.
Eventually I had a consulting surgeon who signed on, as well as a cardiologist locally, and the next thing I knew my mom and I were on a private jet on our way to Houston.
After taking all the tests to make sure that my body was healthy enough to take the surgery, Dr. Safi (the amazing doctor who performed my surgeries) decided that everything was fine and we were ready to go. Some time after my first surgery, they told me that I had to have a second surgery, because I had so many issues with my descending aorta that they simply couldn’t do it all in one surgery.
I spent 39 days in the hospital. Two people got fired because of the way they treated me, as well as their other patients. It wasn’t until after my second surgery that I realized how close I was to dying. I was only 32! Surgeries like this are supposed to be for older people, not people my age. I still cry about it sometimes.
It’s been five months since my first surgery, and on the 22nd it will be 5 months since my second surgery, and I’m still in major pain on a regular basis. My PCP is at a residency clinic, and every time he has a new student working with him, they always timidly ask me if they can see my scar. Sometimes I feel like a freak. I don’t have anyone to talk to that understands what I’ve gone through, or what I’m still going through. This is the single worst thing I’ve ever gone through in my life, and if I was religious, I’d pray every single day that I never have to go through anything like this ever again.