Personal Stories: Julie Raines
Hi everyone, I am a dissection survivor and I hope my story helps everyone that wonders “should I go to the hospital or am I OK”. I have Marfan’s Syndrome, and at the age of 38 I was surprised with an unplanned pregnancy. All of the doctors wanted me to terminate the pregnancy because of the risks, but this wasn’t an option as far as I was concerned. Nine months and every test possible later, I had a beautiful baby boy. Six days after delivering I was sitting on the couch feeding him.
When I went to stand up it felt like someone stuck a knife between my shoulder blades. I had searing pain in my back and shoulders, and I couldn’t breathe. I called for my husband to get the baby and told him to call an ambulance, something was wrong.
The ambulance driver was very nonchalant about my pain (Unfortunately Marfan’s Syndrome isn’t very well known among emergency personnel) and he even suggested that I don’t go to the hospital if it was just a pulled muscle or something in my back. Fortunately there was an emergency room doctor that knew a little about my situation and he immediately ordered a CT scan. The scan showed a aortic dissection had occurred. All of a sudden I went from just another patient to a critical cardiac patient. I was flown by Healthnet to the Cleveland Clinic for treatment.
The doctors at the Cleveland Clinic did MRI and CT and finally diagnosed the dissection as a Type B descending dissection. I was put on mega doses of hypertensive, told to try to reduce my stress level (yeah right, with a new baby at home), and sent home after being scheduled to see a thoracic surgeon in two months for a possible elective surgery at that time.
Six days after returning home I was awaken in the middle of the night with what I can only describe as a funny feeling in my chest. My heartbeat was very prominent in my neck and on the right side of my chest and it “just didn’t feel right”. Back to my hospital, and another Healthnet flight to Cleveland and I was then told that the dissection had formed an aneurysm in the arch and aortic valve, and surgery was performed.
Long story short (too late), never, never, never disregard any pain or “funny feelings” you may experience in your chest or back, especially if you are a Marfan’s patient. If I had stayed home and “let the pain pass”, as I normally would have done with any other pain, I would be dead now, and my children would be motherless. One of the hardest things for me to handle in all of this was waving at my husband, daughter and 6 day old son as they loaded me into the airplane to fly me to Cleveland, knowing what was going on inside of me and what could happen at any time.
Although it was hard to leave them , I knew that I had to get this taken care of and get back to them. The doctors at Cleveland are wonderful, and at no time was I ever scared about what was happening.
Now, I have a question for everyone else. What is the long term prognosis for a Type B dissection? They repaired the Type A dissection but left the Type B. It extends from my left carotid, down through my descending thoracic, and into my right iliac artery. Will this “heal” or will I always run the risk of another aneurysm forming. Why do I still have some pain between my shoulder blades? I can’t seem to get a straight answer from my doctors about this and I need to know.
Thanks for listening.