- CASE FILE
I have very rare Vascular & connective tissue disorders with no cure and I’m really struggling with debilitating pain and nausea. HELP
ABOUT THIS CASE FILE
My first artery dissection, that was diagnosed, was in 2009. I was a top Realtor at the time. I was looking for land when I felt pain like I had never felt before. My right renal artery was tearing. I was diagnosed with Fibro Muscular Dysplasia and Ehlers Danlos Vascular. I’ve had several vertebral dissections, renal dissections and aneurysms. I have 2 rare, genetic cysts that are currently eating through the bottom of my spine. I had surgery 12/19/18 because my stomach and celiac were tangled and I was starving to death, before they would do the surgery, I went catastrophic and was put into hospice with 7 days to live. Since I rip and shred so easily, doctors will not work on me unless I go catastrophic. My heart stopped 3x while I was out on a blind date my boss set me up on, they found me on the bathroom floor in the restaurant, I was 21. That’s just a tiny bit of what I’ve gone through but I think all of that pales to what I’m experiencing now. I have excruciating pain in the center of my chest. My Internal Medicine Doctor just told me that my bones are all swollen in my chest area as well, which I had a suspicion of. Sometimes the chest pain feels hot, sometimes it’s throbhing and sometimes I think I’m tearing. I also feel it very badly in the center of my back. I can barely breathe, I think that might be the worst part. I’m always trying not to panic. The upper right side and of my stomach is really hurting. I’m nauseated, I’m fatigued, I can’t eat, I’m having a hard time swallowing, my voice has been gone for a year now, so badly, they just checked to see if my vocal chords were paralyzed, they aren’t, and I have this god awful heat that comes over my body. I turn cherry red and soaking wet. I’m weak and my left leg and foot and my groin area hurts. This is terrible, this is the first time that I went to the emergency room because I thought I was going to die. I’ve been through a lot and something is very wrong and it’s being missed. I need help. I just asked my doctor if there is a hospital or somewhere I can go because i need answers and I’m having a hard time taking care of myself. Just 14 years ago, I was a top Windermere Realtor and owned my own small business...I just don’t know what to do or where to turn. I’m suffering and I’m scared. My mom was killed in an air ambulance plane crash when her aorta tore, my uncles heart burst, my grandma died from a brain aneurysm and many more. I need help and I’m feeling desperate. I also am a twin. My twin is also experiencing symptoms.
UPDATE: I have been hospitalized. From here I enter pallitave care then hospice. My gallbladder has encroached into my stomach, my liver is starting to go bad, my voice is gone and the connective tissue in my chest is shredding apart.