A certified island girl. Marshallese/American. A mother. A wife. On the liver transplant list. The middle child. Daddy's girl.
Taking photos. Animals. Popsicles. Summer. The Ocean. Coconuts. Laughing. Hugs and kisses. Reading. Soccer. Music. Dogs. Lists. Tech. Swimming. Snakes.
I don't love...
Snakes. Leprechauns. Scary Movies. Golf. Snow. Judgmental people.
Organ donation. Animal Rescue. Conservation.
So whats my real story?
I was born and raised in the South Pacific. Kwajalein RMI to be exact. It is one of the most beautiful places you could imaging. 3 miles long and a half mile wide. No personal vehicles so we all rode bikes or walked. We rode home during our lunch breaks. Our high school sports teams played against adults on the island. Marine Biology classes walk across the street to the beach to snorkel for class. It truly is a place you have to live to believe it exists.
I met David there when his family moved out there. But it took us a few years to figure the relationship stuff out. After I graduated, we moved to Florida. We worked at Disney World for a few years. We got married in 2004 and welcomed our first son in 2005. In 2007 we drove across to Texas for our next adventure. Which involved another son in 2009.
During my pregnancy with Alex, I was diagnosed with Budd Chiari Syndrome as a result of a unknown blood disorder. My liver was greatly enlarged and even though one doctor suggested I terminate, I knew that was not in my plans. I went forward knowing that I could lose him and that I too could possible not make it. I was being seen 3 times a week minimum and for the rest of the pregnancy, I did my best to live life as full as I could. Mind you I had a 3 year old at home that still needed me to be his momma.
After I gave birth to a healthy baby boy, the waiting continued. The doctors weren't sure what my body was going to do. I was still having monthly and some weekly visits with my array of doctors.
I'm 2010 I was listed for a liver transplant. Yes, I have been waiting for FIVE years, but that is OK by me. That means I am stable and healthy. That means I can be at home with my boys instead of in a hospital.
These days, I see a hematologist to monitor my blood every 3 months. But I do labs monthly for them. And I only have to go to the Transplant Clinic every 6 months now. I have MRIs and an endoscopy every so often to keep an eye on things. But other than having to take a bunch of expensive medication that mostly make me feel worse, I'm pretty much a normal mom. I do probably take more naps that the average mom or admit it at least.
I started this blog to share my story and give hope to others who were living with this disease. I could not find anyone else with Budd Chiari and wanted to be here if someone was looking for someone with it. I felt hopeless when the only blog I could find was by someone who had passed away because they were not able to get a new liver in time. So this is me sharing my family, my dogs and all the crazy in between.