Ashley Graves Cleveland Clinic Fund
My name is Ashley Graves. I am 27 years old and I have an 8 year old son who is my entire world. It is because of my son that I am asking for help. I want to continue to watch him grow into the incredible young man that I know he will be.
I was diagnosed with Crohn's disease at 11 years old. I've struggled throughout my entire life to achieve remission with no success. I exhausted all options, and at 25 I had a total colectomy. At 26 I had a proctectomy, making my ileostomy permanent. In early December 2015, I was diagnosed with Gastroparesis which is paralysis of the stomach. When I eat solid food, it sits in my stomach for many hours causing me pain and it almost always ends in vomiting. Occasionally, it doesn't make me sick, but it will sit in my stomach for long periods of time, sometimes for days. Shortly after in January 2016, I was also diagnosed with Prinzmetal Angina. This causes the coronary artery to spasm resulting in chest pain and low blood flow to the heart. If not stopped, this can cause a heart attack.
In February 2016 I had a nasal feeding tube placed that bypassed the stomach and went all the way to a portion of the small intestine known as the jejunum. I became completely dependent on tube feeds, and I lost 20 lbs in less than two months. In May 2016 I had a more permanent feeding tube surgically placed in my abdomen. In August 2016 I was diagnosed with diffuse bowel dysmotility. This ultimately means that my intestines have now stopped functioning properly, and they are not moving the formula from tube feeds as they should. I have lost another 10-15lbs in the last 6-8 weeks, putting me under 120lbs.
This is where I am needing your help. There is not a single motility specialist in the state of Tennessee. My doctors at Vanderbilt can no longer do anything for me, and they are referring me to the Cleveland Clinic. I am on disability and I have Medicare along with state insurance. Cleveland Clinic will not accept either of those, and the TNCare will likely deny the request for coverage out of state. The initial consult is a little over $800. This does not include travel cost and accommodations. After the consult, we should have a better idea of how much everything will cost. We are anticipating this to be very expensive.
Thank you in advance for every donation given!
Be sure to find me on Instagram to learn more about me and my journey! @vongraves
You can also follow my story on Tumblr.
There is a drug called propulsid I can try. However, it's not FDA approved and will need lots of monitoring. I will have to go to Cleveland almost once a month to have vitals, ekg, and medication dispensed to me. That's expensive as well as travel and accommodations.
To put the icing on my cake, our home burned down April 1. Landon and I have been living at my best friend's house until an apartment is available in our city.
I ended up with a line infection at the beginning of August. It spread to my blood stream. Once that happens, they say 40% of cases are fatal.
Life has been more challenging than it should be these days, but we are smiling and kicking butt!