WARNING: Lengthy post! ♡
Hello! ♡
Because today is World Hepatitis Day, this post would be fitting. I want to raise awareness for this misunderstood condition ^^
I have a disease called autoimmune hepatitis, but I'll just shorten it to AIH ^^ What is AIH, even? Basically, my immune system suddenly freaked out one summer day in 2014 and began attacking my poor, innocent liver. Why? Nobody knows. But, if untreated, the immune system will just continue attacking my defenseless liver, leading to scarring, damage and even liver failure and... death! *gasp*
But, it's okay, as long as I take my lovely mixture of pills every day. Anyway. There is no cure, but there is treatment. One day I might be able to go into remission, when I can stop taking my pills, but the bad news is that it can come back >< It's a pretty rare disease, but if anyone out here has it too, please feel free to talk to me! ♡ I'd love to have more people who I can talk to and understand what it's like.
All of this started with... my toe. Yes, my toe kinda saved my life. If I had just waited for it to pass or something, then would I even be writing this blog post right now? Anyway. I was an awkward and ugly 12 year old, and my toe started hurting out of nowhere. It got so bad, I could hardly walk. I thought it wasn't a big deal, and it'd pass. Little did I know. Heh. Eventually I went to the doctor, expecting some sort of magic pill, and what I got was a blood test- the first once since forever, and the start of a long and painful adventure with them. No big deal, right? Nope. Surprise. The following day, I got a call from the doctor, and I was told there's something wrong with my liver. One enzyme's levels were 20 times above the maximum normal. Healthy people have, at most, 55. My result was in the 1300s. I was confused. I was always so healthy. What does the liver do? What does it look like? Will I die?
No worries, I was about to become a liver expert. In my confusion, I had no idea I was about to be put in a ward. So when we went back home, I didn't know I wouldn't see it again for the next fortnight (two weeks for Americans), and made a huge mistake- I decided not to get some food. Oops. Still confused, I ended up in the A&E. For 7 hours. At least they gave me orange juice. Then I got a cannula put in (with numbing cream, thankfully) and I had no idea what it was. Ignorance is bliss, because when I found out, I was disgusted. I'm really squeamish. Then, when I was told I'd be put in a ward, I was surprised. I've never stayed in hospital before.
While my dad went to get my things, I had no idea what to do. I was so bored, so I just stared out of the window. For the next week, I laid in bed eating hospital food and entertained myself with my laptop, while they tried to figure out what was wrong with me, but for some reason I wasn't as stressed about it as I should have been. Maybe the hospital cakes kept me distracted. The worst thing was probably the 3am blood tests, and when it was time to give me IV meds, ESPECIALLY in the middle of the night. The stinging was so bad. I hated it. Then, a week later, they still haven't figured out what was wrong with me, so they transferred me to a hospital with more specialist knowledge.
Now, this hospital was fancy. It was also the hospital where I finally got my diagnosis- autoimmune hepatitis! They gave me an information leaflet, so I could make sense of it. And the doctors were so lovely and helpful. I got a bunch of pills prescribed, and finally, I was free! What next?
I came home, but because my immune system was weakened, I didn't have to go back to school until September- yay. But, I had to stay inside as much as possible. I was on high doses of prednisolone, which made me look like a hamster for a few months. I didn't notice this until I later saw a photo of myself from the time, and screamed. You know that creepy moon emoji? Yeah, that was me. 🌚
I was supposed to have a biopsy (procedure where a needle is inserted into the liver and some tissue is taken out for analysis) back in late 2014, but every single time I had problems with blood clotting, so I was sent back >< I finally had my first biopsy in July 2016, I stayed in a hospital in Warsaw for 3 days. My biopsy results showed that I had moderate, and in some places severe fibrosis- scarring of the liver. Really severe fibrosis is called cirrhosis. Cirrhosis is kind of like the path to a transplant, if it worsens, and some other things, which really worries me. As I was diagnosed so young, at some point I will probably need a transplant. It's an unpleasant thought >< I was supposed to have another biopsy this month also, but I got sick and it had to be postponed. It will be done on the 19th of November. I'm quite worried about the results as I fear my liver is more damaged now, but perhaps it will be okay.
People asking if you've been drinking the moment you say you have a liver disease. I'm 16, I would have to drink since I was like 6 to have a liver disease!!
Or, people asking how you "contracted" AIH as soon as they hear the word "hepatitis".
Feeling paranoid and checking if the whites of your eyes are a bit more yellow daily.
Wearing a surgical mask in winter because your immune system is weak, to avoid catching an illness, and to protect yourself from air pollution, which is bad for everyone, but also isn't doing the liver and immune system any good >< Though... they do give some extra warmth, so can't complain.
Stomach and upper right quadrant pains that come from nowhere and trying to function properly and look like you're okay. Sometimes they honestly make it hard to function ><
Feeling guilty after taking painkillers for a really bad pain or just dealing with it for fear of damaging your liver
Brain fog that strikes at the worst moments, for instance when I studied for a Chemistry quiz and knew everything, and then during the quiz brain fog happened and I got 0 points...
Feeling like I've just run a marathon after walking up a single flight of stairs.
Having to rest after showering or brushing your teeth.
FATIGUE!!! It drives me crazy and means I have to use my energy carefully.
Looking like a hamster when on higher doses of prednisone, and the constant fear that you will flare and your dose will be raised and you'll get moon face again.
Taking all those pills every day and feeling like an old lady.
Frequent blood tests... eww.
Watching closely for symptoms of a flare, especially during stressful periods, and panicking when you notice them.
Not being very physically strong in the first place, but the meds making you even weaker, so that you struggle to open doors sometimes.
And.... I think I've written everything there is to say about my disease! I tried to write not from a purely clinical perspective, but from the perspective of someone who lives with AIH and experiences the things my doctors didn't tell me about. There were doctors , and family members and people I know who told me my suffering isn't valid, that it's all in my head. But connecting with others who know what it's like has been a HUGE help. I hope that World Hepatitis Day will help raise awareness of liver health- viral hepatitis, but the other, misunderstood types also.
Have a lovely day!
~Milky ♡
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