Name: Amber Berg
Age at time of Dissection: 28
Type of Dissection: Descending
Date of Aortic Dissection: 29 August 2010 Tell Us Your Story: I am a 28 year old Marfan’s patient in Denver Colorado and on August 29, 2010 I was 6 days post postpartum (my 2nd daughter was born via scheduled c-section on August 23, 2010). I had been advised against giving birth to a second child due to the dangers and risks with Marfan’s…of course, I didn’t listen…
My husband had just cooked a late dinner and I was sitting on the couch eating. I started feeling an odd pain between my shoulder blades, not on my back, and not on my chest. It literally felt like it was in the middle. I kept telling my husband that I felt weird and I had never had that feeling before. All of a sudden the pain shot down my back, it felt like someone was stabbing me from the inside. The pain was so intense that it took my breath away. it came in waves and was so scary. We packed up our 3 year old and our 6 day old and headed to downtown Denver to the Emergency Room. Luckily, one of the doctors that was working new a little bit about Marfan’s.
I told them that I was 6 days post postpartum, I already have a dilated aortic root (4.3 cm) and I had Marfan’s. He immediately gave me some pain meds through an IV and ordered a CT Scan. After my scan, he broke the news to me. My descending aorta had dissected. I called my parents from the hospital and told them, they raced to be at my side. Marfan’s is very present on my dad’s side of the family and both my grandfather and my auntie passed away when they had their aortic dissections. I remember them wheeling me up to the ICU and I don’t remember the next 17 days.
I was in the hospital for 20 days, I remember the last 3 days and have been told that it’s better I don’t remember the 17 earlier days. The vascular surgeons were about 5 minutes away from sending me to Houston Texas for Dr. Joseph Cosseli to perform surgery when he had suggested that they try to use medication to control my dissection first. While in the hospital I have been told that I “Freaked out” and was ripping tubes out of myself and pretty much going crazy, I don’t remember any of that. My dad did tell me that he was advised by Dr. Cosseli that this “freak out” was very common among dissection patients and that no one has been able to figure out why it happens. I have been home now since September 17, 2010 and am terrified everyday that something bad is going to happen.
I continue to have extreme pain in between my shoulder blades, not the same pain that I had that dreadful night, but severe and extreme pains. I am on a TON of blood pressure medication, take my blood pressure twice a day and send my numbers to my cardiologist once per week. On Monday October 18th I have a CT Scan schedule and then I meet with the vascular surgeon’s and my cardiologist shortly after. I pray that everything is OK and healing correctly, but I am very anxious about my appointments. I am hoping that I will not have this continuing pain for the rest of my life and that it is not a sign that something is wrong.
Eventually I will have to have 2 surgeries. One to replace my aortic root and one to replace my descending aorta. Now that I have kids and a family I am very worried about these surgeries and am overcome at times with an extreme feeling of guilt. I don’t want to leave this earth without seeing my girls grow up and I don’t want to leave my husband as a single father. Finding this website offered a bit of relief. To read other stories similar to mine and to see that I am not the only one with these feelings.
Has anyone else continued to have pain after their dissection?
Thanks for taking the time to read my story.
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