Aortic dissection and aneurysm, marfan syndrome

I would have never thought that I would have to ask for help from anyone, but life can throw some crazy curve balls. I was born with Marfan-Syndrome and have always had an issue with my mitral valve but it has never gave me problems while growing up.

My life and health was jeopardized on February 2nd, 2019. I was sitting on the couch with my mom watching movies like any normal Saturday night, and I started having severe pain in between my shoulders! It felt as if someone was squeezing my heart as tight as they could. I tried everything to get comfortable but nothing would work! I thought I was having a heart attack. I finally told my mom what was going on and she woke my husband Christopher up and they took me to our local hospital in Coffeyville Ks. I was diagnosed with an aortic dissection type B and a large aortic  aneurysm. Coffeyville hospital then decided to transfer me to a hospital in Tulsa Oklahoma. I was admitted there on February 3rd. The doctors was able to bring my blood pressure down to a safer range. When I went in my blood pressure was initially 170/90. I had a really rough 5 days in the cardiac ICU. During my stay there I had received over $54,000 in just medication to save my life. When I arrived there I was told how lucky I was to still be alive. I was in St Francis Hospital until February 11th. At this hospital they didn’t have much experience in the surgery that I need to replace a large part of my aorta and to fix the dissection. After a lot of research and phone calls we was lucky enough to find a hospital in St. Louis Mo, called Washington University/ Barnes Jewish Hospital. I was accepted and admitted here on February 20th and will remain here until I can have this major surgery. 

My husband, Chris will be taking some time off work through this to take care of Me and his job is working very well with him. I do have BCBS insurance, but with a very high deductible $5000-$10,000. We all know that medical bills, the expenses of traveling, medications, and food add up very quick........... I would normally never ask for help but during this time we would truly appreciate anything. We have a 7 year old daughter named Claire and Chris will be traveling back and forth from St. Louis to Coffeyville Ks, to make sure she has everything that she needs while she stays with family members. This has been a very emotional month and I am so thankful to still be here on this earth. I just want to be able to stay alive to watch my beautiful daughter grow up and take on the world! 

Marfan syndrome is a genetic disorder that affects the body's connective tissue. Connective tissue holds all the body's cells, organs and tissue together. It also plays an important role in helping the body grow and develop properly. 

Aortic Dissection- A tear in the wall of the MAJOR artery that carries the blood out of the heart. As the tear extends along the wall of the aorta, it causes blood to flow in between layers of the blood vessel wall and not through the heart and body accurately. They have not repaired anything yet. 

The Cardiac Surgeon feels that the tissue at this time is even more fragile and it needs to become thicker before operating. Hopefully this will be done in the next few weeks. 

We we are truly grateful for any donations!