When I sit down to write a post, I usually start by looking through pictures to see what memories are conjured up. This time around, it felt a lot like watching the countdown timer ticking on an explosive device...
Looking back, the months immediately following our wedding were truly blissful. We honeymooned in our two favorite places:
By the time we got back, fall was in full swing.
I remember the first time I heard about COVID, it was still being called the "Wuhan Virus," even by liberals. Most folks I talked to weren't too concerned, but I remember that everyone at work seemed to have a cough, and I got really sick in April of 2020.
My bloating had been getting so bad that I was unable to move around. Being stubborn and afraid of doctors, I wanted to just tough it out, but eventually (thankfully!), Molly insisted that I go to urgent care. The doctor at urgent care felt around my belly and noticed the huge amount of bloating, and felt what she thought was a large mass (at this point, we are quite certain this was actually my very swollen and angry liver). She told me "If you were my son, I would send you to the hospital tonight". Molly drove me down to Adventist a few hours later. Over the next few hours, I was subjected to a massive battery of tests and procedures. That period is still a dark haze in my mind. I know they took a lot of blood, drained my belly, and did a liver biopsy while I was still mostly conscious. Honestly, I couldn't have done it without huge support from Molly and my family, plus very kind and understanding doctors and nurses.
After I stabilized at the hospital, they still weren't sure what had caused my extensive liver damage, but they had ruled out all of the common explanations like hepatitis, extreme alcohol use, and bunches of different kinds of cancers. They actually ended up treating me for parasites, and referring me to a liver specialist.
At this point, my photos pretty much stop. From August through September was brutal. We weren't getting any traction with the liver specialist. It seemed like every interaction took a week, and every test proved less useful than the last. My bloating was actually a symptom of hypertension in my liver system plus cirrhosis, which causes a liquid called ascites to leak out of your liver and fill the belly. At one point, I was really struggling to get any appointment to drain this ascites, and it wasn't until I had built up 9 liters of ascites that I was able to go through the paracentesis procedure to get it removed. When you have that much liquid in your belly, moving feels awful, and I was rapidly getting weaker and less healthy.
At this point, I was still immensely grateful for several things:
1. The support from Molly, my family, and church was incredible.
2. My work was unbelievably understanding and made me feel valued and cared for despite spending so much time doing medical things, and some days only being able to work a few hours before I was totally exhausted.
3. My employer provided health insurance made it possible to get the treatment I needed without worrying about going bankrupt.
As time went on, I continued to get worse, becoming less able to move and more reliant on things like a wheelchair, while the ascites built up faster. Plus, we were nowhere closer to a diagnosis or treatment plan. Luckily, Molly is incredibly gifted and well connected in the medical arena, and after talking with her friends and mentors, she decided it was time to go to OHSU.
Despite a surging delta variant and limited hospital beds, we were admitted at OHSU, and the care provided was incredible. They were able to complete so many tests in a few short days, which would have likely taken months at the rate things had been going.
In the end, I was diagnosed with "Bud Chiari" Syndrome, a rare condition where blood clots form in the portal veins of the liver. In my case, they believe this is caused by a genetic issue where my portal veins are very small, and ended up basically suffocating the liver slowly over the course of my life. Eventually, the liver gets more and more scarred (called cirrhosis), and stops being able to produce the proper anti-coagulants, leading to clots and in my case, rapid onset of symptoms.
The treatment for Bud Chiari is blood thinners. Prior to using blood thinners, I had been producing about 5-7 liters of ascites ever 1 or 2 weeks. This led to regular paracenteses, and lots of discomfort (I liked to describe it as going from 0 to 5 months pregnant in a week, every week). Now, I'm going on 2 or 3 months without having to get drained!!
I will never be able to drink alcohol again, will probably be taking blood thinners for the rest of my life, and am currently on a strict low sodium diet, but I am alive and getting stronger each day. They say it is possible for a liver to heal itself when it is in stage 3 of fibrosis, but unlikely. I may eventually need a procedure to create more room for blood to flow in my liver. It's also possible that I may need a transplant some day. I'm just glad to be connected to several doctors I trust, and to be feeling stronger and more alive. For now, we keep monitoring the condition, and in the meantime, get back to living!
