Some really, really great news! (and a tiny bad -TMI-)

So, we'll give the good first so that anyone who WANTS to read my TMI can, but everyone else can pass.

So far 3 folks have completed the Donor Evaluation. (There is a mystery 4th, who hasn't revealed themselves to me, which is fine, except that I'm insanely curious)

The first two really wanted to be a match, but it wasn't in the cards. The third girl stopped by today. She is all but a match. So here's the deal though. She has 4 bile ducts. 2 is the standard. Because of this, she is delegated to backup/emergency donor. If something happens that I suddenly need a transplant or I'll die...they'll work with hers. In every other way, we are a perfect match. But the surgery would be more complicated for both of us, which is why they'd rather not if they don't have to. Unfortunately, this means more waiting. And if you haven't gathered, I'm not a very patient...patient.

I'm very fortunate to have so many people WILLING to call in to find out the process. Angela (the donor contact) said that she's never had so many non-family members call in for one person. You guys are seriously the best.

Interestingly, though, I'm going to be curious when I see DrG on Monday. He keeps asking me about whether or not I have donors. I guess the two teams are entirely separate and don't communicate at all until there's something to communicate about.

Something that is also kind of bad, but not the TMI thing is that I'm developing a sort of agoraphobia. It's becoming increasingly difficult to want to leave me house for anything. I'm not afraid to leave my house...It just takes so much effort to get ready (showered & dressed), driving takes energy if I have to do that, regardless of how I get there, bumps have been terrible since my body hasn't recovered from my surgery in May, and then I get to wherever I'm going...and I know I have to do the return trip...Being social is super exhausting right now. Depression is winning right now and I hate it.

Now is the time to not read on unless you REALLY want to know all (Even the gross) you can about this process.

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The bad is...my ammonia level is high. Normal is >33. Mine is currently 56. When I had my last "episode" (I'll explain), it was 75.

So when my amonia level gets high, I kind of...lose it. I start being repetitive in speech or in movement or both, and I don't know who anyone is if I've gone deep enough. It's hard to get my attention. I don't respond to my name(s). It takes some form of physical contact to get my attention.

This could happen. Any time. Anywhere. So far it has happened twice. Once was years ago, the other time was this month.

BUT!

There is a solution. Ammonia leaves the body via bowel movement. If I am close to you, you probably already know that I don't poo (<---this is the only word I felt was the least icky) very much. They want me going 3-4 times a day. I don't think I go that much in a week. So...I have to start pooing. And I'm very unhappy about this.

Backgrounds and Beginnings

When I was 2-3 years old, my Pediatrician discovered that my liver was enlarged. It extended below my rib cage. They monitored it. He suspected it was just something that I would grow into when I hit puberty and since it wasn't causing any problems, he left it alone. When I was 10, I was taken into Children's to have a liver biopsy that came back as "inconclusive" for anything they expected to find.
As I switched from a Pediatrician to a family doctor, everyone (including myself) just kind of forgot about it. It wasn't causing any issues. It was still enlarged (at least to my knowledge), but it was invisible.

I continued my life without any restrictions, which means I drank, had sex, experimented with drugs...things you do. Sometime in 2010, I went to the ER because I was having an immense amount of abdominal pain. They always think it's kidney stones. It's never ever been kidney stones, btw. So they did an ultrasound to look for stones. Then they sent me home. Couldn't figure out what was wrong, so they blamed it on dehydration.

I went in a few months later for my yearly checkup. My doctor said "That last ER visit, they found Liver Cirrhosis, so we'll need to get you a referral." I was flabbergasted. He thought I already knew (someone was supposed to call me), and he was very casual about it. I didn't know much about it, other than it was normally found in old people who drank too much and that it turns people yellow. We had a conversation, but it wasn't something I was too worried about.

I got in to see a Gastroenterologist. Pretty much those guys follow the track of organs from esophagus to colon and every organ in that connection. That was bomb of a day. He tells me Liver Cirrhosis has no cure outside of transplant. I was freaked out.

They did another liver biopsy and a few other tests. I was diagnosed with Cryptogenic Liver Cirrhosis. Cryptogentic is just the doctor term for "We have no idea."  I also had some other symptoms of Cirrhosis on the inside.

I went through a transplant evaluation where they told me I was too healthy for transplant and they told me to take care of myself...stay away from alcohol, and salt, and sharp pointy foods and anything that's hard for a liver to process. They also said it would be 5-15 years before my liver was bad enough to do anything about.

Almost 6 years later...I told my mom I needed to get re-hydrated at the ER. This is something that I'm really susceptible to. Any stomach problems cause me to loose a lot more fluid than my body can reproduce quickly, or that I can keep down.

She takes me in and the ER doctor was just the best. He diagnosed me with pancreatitis, and admitted me. Now, the next day, I was determined to get home. I mean, who really likes being in the hospital?

I went home, but ended up back in the ER the next day. They admitted me again, and started running more tests, including a CT scan. In this scan, they determined that my liver was much worse than when I was last checked and that there was a mass in my liver.

Once I got out of Sewickley, they told me to get in right away with the Liver guy at UPMC. Dr. G, since he's gonna be a bigger part of this...may as well give him a name. I got in to see him pretty quickly. He explained that I have primary hepatocellular carcinoma. Then he ordered an MRI.

He explained that for my MELD Score would be increased due to the cancer and that I was now be qualified to get on the list.I had the MRI done and this is what I know.

My cancer is 1.6 or 1.8cm. The tumor needs to reach 2cm before it qualifies me for the "bonus points". My MELD score is currently a 7. The bonus points will push me to 20+ When the tumor hits 2cm, I will have surgery to kill the cancer cells (Tumor ablation).

In the mean time, Here are some important dates:
Feb 22-26 - Transplant Evaluation
Mar 7 - Tumor measurement and followup with Dr.G