Thank you for hanging out with me! From day to day you never know what life will throw at you. And it will often be this way in my blog as well :) But lest RUN WILD and LIVE FREE in this amazing adventure together!
My story with being diagnosed with AIH started in the spring/summer of 2002. I was living in Mt. Pleasant, MI and my home church in Holland, MI asked me to come on a mission trip with them to Niagra, NY. I grew up loving mission trips so of course I was happy to go.
All the way to NY I slept a lot. Which I figured was just being tired but the other leader who was driving was concerned and expressed that to my mom. She was with as well.
I don’t remember much of the time in NY. I know I slept a lot that first night and was not feeling well spending a lot of time in the bathroom. The next day I went to the hospital. Being the area that we were in I got questioned a lot if I had been doing drugs or sleeping around. This can be very frustrating for an 18 year old who was not doing any of that. It was very frustrating to my mom as well. They did bloodwork and told me I had hepatitis. This answer did not sit well with my mom because there was nothing I had done in my life to bring on a contagious type of hepatitis. So she rented a car and we drove home. I can’t even imagine the stress this was on her.
To give an idea of how sick I was here are what normal Liver Function Tests are supposed to be. There are three that they test ALT, AST and ALK. These measure a number of functions in the liver but are vital to know the health of the liver:
ALK 30 – 120
ALT 10 – 40
AST 10 – 40
I started this journey in July 2002 with levels of:
No wonder I couldn’t hardly keep anything down and was spending a lot of time in the bathroom along with having yellow skin and the whites of my eyes being very yellow as well!
I was so blessed to be able to have my parents by my side though as they demanded the best doctors in west Michigan to see me immediately. I am sure there were countless phone calls made that I was not even aware of. After these blood test there were several other tests to rule out every other liver disease. Several CT scans and tests to drink really nasty stuff that I don’t even know what they were for! Everything except for my LFT tests came back normal and fine. So last ditch effort was to pull a liver biopsy.
My biopsy was in September 2002 (I believe) and at that time my levels were even higher:
My liver biopsy itself was not bad. The after math was terrible. I have never experienced so much pain and discomfort. But the biopsy led us to a diagnosis of the AHI. We had some answers finally. I was put on very high dosage of prednisone taking 12 tablets a day which was I believe 60 mg a day! Thankfully this helped bring my levels back into a more stable range. It took quite some time to be able to lower my levels of prednisone and add in Imuran.
Imuran is an immune suppressant medication. It is the same type of medication that they will put a transplant patient on often. With the combination of Imuran and prednisone the LFT levels held stable to closer to normal range.
We did decide to have a second opinion done as well at the University of Michigan in the spring of 2003. The doctor we worked with there was one of the best in the nation. He was able to review all of my tests and the past liver biopsy from my doctors in Grand Rapids. He told us that that was one of the worst liver biopsies he has ever seen and that he has really never seen anything like it before. My liver biopsy from UofM confirmed diagnosis and he said it looked much better than the original.
There is a lot more to my story and journey through the last 14 years since diagnosis. But I am just amazed looking back at it now. At 18 we think we will live forever and we don’t understand the extreme nature of some of this stuff. As more of an adult and now that I have a family I really realize how lucky and truly blessed I was from the beginning. God gave me an amazing family that truly went to fight for me. I look at those levels and wonder if I should even be here or if I should have more damage to my liver because of them! Through all the other people I have met with AIH I have never seen anyone with levels that high. It really shows me that God has a plan for me and my life. Am I living it? I don’t know. I am doing my best though and I am excited to see where the future leads!
For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.