I'll start at the end, which is where the good news is, then I'll explain how we got here. We've learned that my liver IS the culprit that's caused my stomach to fill with fluid and many of my other issues. But it's not liver cirrhosis (which would have been very bad). It turns out that my Keytruda treatments caused me to develop acute hepatitis. Now people don't normally get excited about hepatitis. We're excited though. It looks like no permanent damage has been done to my liver and we can hopefully get it back to normal. Wanna guess what the treatment is?
More steroids! So I'll once again get all the great steroid perks like increased energy and appetite, alongside all the steroid drawbacks like insomnia, facial swelling, muscle weakness, and calcium depletion. But if we can fix my liver, it should all be worth it. (I'll also be taking diuretics, which help take fluid out of your body and make you pee constantly. Those aren't treating the liver though, they're just to help keep some of the fluid swelling off my stomach).
So how did we get here?
My last blog post had us doing a portal vein study. Those results actually came back perfectly normal. My condition had continued to deteriorate though. I was so swollen with fluid I looked seven months pregnant!
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| About to give birth to 2.5 liters of fluid! |
I was struggling to breathe when I walked even short distances. Eating was nearly impossible. My weight was stable, but I could tell I was getting malnourished because my fingernails were starting to come in looking very unhealthy. Something had to give.
So my doctor decided to check me into the hospital. My hospital has a special unit for bone marrow transfer patients that's entirely separate from the other hospital units. It was constructed to minimize places dust or germs could accumulate and catered to patients like me in every way. While there we were able to get a paracentesis done, taking 2.5 liters of fluid off my stomach. And that wasn't even all of it! They also tested the fluid, which came back normal. We did a CT of my abdomen, again clearly showing my liver was enlarged. Then we had the main event, a liver biopsy. Once the biopsy was completed we decided I would go home for the weekend. The results wouldn't be back until Tuesday or Wednesday and we couldn't do much of anything in the meantime.
I continued to feel exhausted at home. I was still getting short of breath at the slightest physical effort and eating was still a challenge, even after the paracentesis. On Wednesday I was back at the doctor for results and it was actually really emotional for me. I'd been so worried about cirrhosis, that even the "good" news of hepatitis struck me weird and I cried. After a day to process it though, and a meeting with a gastrointestinal specialist too, I'm feeling much better about everything. I *did* start 60mg of steroids yesterday too though, so that might be some of what has me feeling better.
As far as the acute hepatitis goes, there was a lot I didn't know or understand at first. This isn't a viral hepatitis and doesn't have a letter associated with it (like Hepatitis A or Hepatitis B). It is a drug provoked hepatitis that can, apparently, be treated with steroids and cured. It's also not contagious in anyway, so that's great too. I will be going tomorrow for another paracentesis to take more fluid off my stomach. If we're lucky, this will be the last one though.
Now we just have to give everything time to work!
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