Hello, all you beautiful, lovely people! This first post I'm just gonna catch you up. I'll share how I got to this current phase of life and the types of things you can expect to read and see on here!
At 14 years old I was diagnosed with autoimmune hepatitis (AIH). I went to my primary care doctor with mono symptoms, and a full blood panel test later, I was sent to Arkansas Children's Hospital with elevated liver enzymes (so elevated that they were the same as an 80 year old alcoholic's enzyme numbers!). At first doctors could not figure out what was wrong with me. My mom had done TONS of research and wanted them to test me for AIH, but at first they refused. AIH is rare, and they had never seen a case of it, that couldn't be it. But they finally agreed to test me, and I had the diagnosis that would change my life completely.
Through high school I was on prednisone and 6-mercaptopurine to keep my liver enzymes at a decent level. Then, I turned 18, I lost my insurance, was a college student who had been told my AIH was in remission, and felt fine. Even though I was no longer seeing a hepatologist or gastrointestinal doctor for my AIH, I still felt like I was being responsible. If I ever felt like my enzymes were up I would go get free lab work done at the student center to make sure. I was trying to get insurance through the government (because they were the only ones who would accept me with a preexisting condition), but there was a road block at every turn. At 21 years old, I got married. That same year at the end of November 2016, I had gotten bloodwork done and the student center doctor sent me to UAMS with extremely elevated liver enzymes. This is when life really changed.
For two years I had been on zero medication, thought I was in remission, and then realized I hadn't been responsible at all. I remember laying in a hospital bed and a GI fellow, Dr. T, told me if I didn't start taking medication or going to a doctor I would die. I cried, I hated him for being so blunt. That was when we found out that not only was my AIH not in remission, but that I also had cirrhosis at age 21.
My in-laws helped me get my insurance figured out, and I started seeing none other than Dr. T. For the next two years, I experienced so many things, some of which I will go back and revisit on this blog. In July, Dr. T graduated and moved away to work closer to his family. I was and still am so sad over him leaving, because he was the first doctor I have ever had that listened to me. So, I got a new doctor in the same clinic. My first appointment with him, he and Dr. D (the doctor over all the fellows in this clinic) made the decision to move me from 8 mg of methylprednisolone a day to 4 mg a day.
Two weeks later I go in for bloodwork and a clinic appointment on the day I am supposed to start graduate school. They decided to put me in the hospital due to an AIH flare up, where my liver enzymes went from the lower 100's to the upper 800's in a two week period. While in the hospital, I had a GI fellow follow me from the get go, and yall I wanted her as my doctor. I am a 23 year old female, who wants to family plan as soon as possible after I recover from transplant. Male doctors never quite grasp the need for that. Dr. S is a female doctor who has a personality, and genuinely listens to me and wants to get to the bottom of what is going on with me. So, I switched to her within my same clinic I have been in the past three years.
Looking at where I am now, they started me on an anti-rejection drug called Prograf as a last ditch effort to see if a medicine can control the disease. I'll be doing a blog post on the first few weeks on this medicine soon, because I feel like I need to share my experience. I'm starting my transplant clinic appointments, trying to make it through my first semester of graduate school. From here on I will share with you my experiences with medicine, with dealing with side effects, my journey to a transplant, and what I am doing to deal with all of the above. I also will be sharing my food journey on my Instagram and Facebook, since what I put in my body makes a huge difference in how I feel on a daily basis. Naturally, I also plan to talk about the mental health effects that occur when going through something as big as a life long disease and a transplant. I plan on being real, raw, and completely honest with yall. So if any of this sounds interesting please follow my blog, and go like my Instagram (@choppedliver_ali) and Facebook (Chopped Liver) pages!
XOXO
~Ali
At 14 years old I was diagnosed with autoimmune hepatitis (AIH). I went to my primary care doctor with mono symptoms, and a full blood panel test later, I was sent to Arkansas Children's Hospital with elevated liver enzymes (so elevated that they were the same as an 80 year old alcoholic's enzyme numbers!). At first doctors could not figure out what was wrong with me. My mom had done TONS of research and wanted them to test me for AIH, but at first they refused. AIH is rare, and they had never seen a case of it, that couldn't be it. But they finally agreed to test me, and I had the diagnosis that would change my life completely.
Through high school I was on prednisone and 6-mercaptopurine to keep my liver enzymes at a decent level. Then, I turned 18, I lost my insurance, was a college student who had been told my AIH was in remission, and felt fine. Even though I was no longer seeing a hepatologist or gastrointestinal doctor for my AIH, I still felt like I was being responsible. If I ever felt like my enzymes were up I would go get free lab work done at the student center to make sure. I was trying to get insurance through the government (because they were the only ones who would accept me with a preexisting condition), but there was a road block at every turn. At 21 years old, I got married. That same year at the end of November 2016, I had gotten bloodwork done and the student center doctor sent me to UAMS with extremely elevated liver enzymes. This is when life really changed.
For two years I had been on zero medication, thought I was in remission, and then realized I hadn't been responsible at all. I remember laying in a hospital bed and a GI fellow, Dr. T, told me if I didn't start taking medication or going to a doctor I would die. I cried, I hated him for being so blunt. That was when we found out that not only was my AIH not in remission, but that I also had cirrhosis at age 21.
My in-laws helped me get my insurance figured out, and I started seeing none other than Dr. T. For the next two years, I experienced so many things, some of which I will go back and revisit on this blog. In July, Dr. T graduated and moved away to work closer to his family. I was and still am so sad over him leaving, because he was the first doctor I have ever had that listened to me. So, I got a new doctor in the same clinic. My first appointment with him, he and Dr. D (the doctor over all the fellows in this clinic) made the decision to move me from 8 mg of methylprednisolone a day to 4 mg a day.
Two weeks later I go in for bloodwork and a clinic appointment on the day I am supposed to start graduate school. They decided to put me in the hospital due to an AIH flare up, where my liver enzymes went from the lower 100's to the upper 800's in a two week period. While in the hospital, I had a GI fellow follow me from the get go, and yall I wanted her as my doctor. I am a 23 year old female, who wants to family plan as soon as possible after I recover from transplant. Male doctors never quite grasp the need for that. Dr. S is a female doctor who has a personality, and genuinely listens to me and wants to get to the bottom of what is going on with me. So, I switched to her within my same clinic I have been in the past three years.
Looking at where I am now, they started me on an anti-rejection drug called Prograf as a last ditch effort to see if a medicine can control the disease. I'll be doing a blog post on the first few weeks on this medicine soon, because I feel like I need to share my experience. I'm starting my transplant clinic appointments, trying to make it through my first semester of graduate school. From here on I will share with you my experiences with medicine, with dealing with side effects, my journey to a transplant, and what I am doing to deal with all of the above. I also will be sharing my food journey on my Instagram and Facebook, since what I put in my body makes a huge difference in how I feel on a daily basis. Naturally, I also plan to talk about the mental health effects that occur when going through something as big as a life long disease and a transplant. I plan on being real, raw, and completely honest with yall. So if any of this sounds interesting please follow my blog, and go like my Instagram (@choppedliver_ali) and Facebook (Chopped Liver) pages!
XOXO
~Ali
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