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Maggie's Liver Journey
7/10/2016 Latest post:
Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most. Those of you who know us know that we've up a lot of ups and downs with our health: I was diagnosed with sarcoidosis in 2006 right after starting my graduate program in TESOL (Teaching English to Speakers of Other Languages), Nelson experienced an aortic dissection in 2007 and after 4 years of teaching in the Middle East, I was diagnosed with cryptogenic cirrhosis (which means they're not sure why I have it, I just do and later, US doctors surmise that I had a fatty liver which turned to NASH, Non-Alcoholic SteatoHepatitis). We returned to the US.
I was able to find a position in the English Language Institutute in the summer of 2013 and very soon started experiencing problems with my gall bladder. The GI wanted to work me up for a transplant (no insurance then!) and the surgeon said my platelets were too low to remove the gall bladder). So, I carried on as usual and actually felt better after getting my electrolytes balanced out and learning how to cope with those spasms. In the fall of 2014, I started having some serious problems with memory and cognition. In all honesty, I thought I had early onset Alzheimer's. So did my family. My teaching started to suffer although I spent almost all of my time lesson planning, teaching, grading, etc. I finally was referred to U of M for liver transplant evaluation. They prescribed lactulose (basically poop juice which binds with the ammonia/toxins my liver wasn't able to filter and which was causing the problems with my brain) and Xifaxin (which helps kill the gut bacteria that produces ammonia/toxins).
I eventually transferred my case to Henry Ford in 2015 which is able to perform living donor transplants. It was Joey's idea to give me part of his liver. I had not thought of it until then. All of my children volunteered for testing and after some research, it was clear this would be my best chance. Ultimately, Joey offered first and I just felt he was the "right one." After I completed my testing and was approved for transplant, he completed his and was a match.
After some aggravating stops and starts for various reasons, our tentative transplant date is July 27th. Thus, I have started a Caring Bridge site so Nelson and my kids can update family and friends on my condition while I am in the hospital. Since the date is also close to the date that my insurance and half time income will end, I will have to pick up COBRA. I will not have the money to continue it until the next enrollment period and am setting up a Go Fund Me Page to help us through the scary times. The meds are the scariest expense and could cost me thousands of dollars without insurance. I am still waiting for word from disability. We have cut back on everything here, keeping only those critters who provide us some kind of income or food (goats, pigs, chickens and turkeys) and are managing to keep up by stocking ahead when we had income to keep our old guys, Max and Malik with us. I will provide a link here and if you aren't able to help financially, prayers, love and light are also very valuable on our precarious journey. I feel guilty that I will be getting this new chance at life as there are sooooo many people out there who are younger, worse off health wise and financially than I am. And I am so thankful for the people who have stood by me, even when they didn't understand what was happening to me (I didn't understand either!) and loved me and helped me, hugged me and offered encouraging words...I am very blessed and I know. I know that between God and my family and my friends, I will make it through. I am new to Caring Bridge so if anyone has ideas or suggestions or questions, please let me know. For now, I will try to keep a journal this month leading up to transplant and then the girls will have to take it over for me. I love you all. Thank you!