It's been a long time since I wrote here but I've had quite a lot on my plate. We recently discovered the actual cause of my liver disease is a combination of autoimmune disorder and something called Primary Sclerosing Cholangitis (PSC for short). It's an autoimmune disease of the bile ducts that causes bile to back up into my liver and poison it. There is no treatment to slow or stop the disease and it's also extremely rare because I'm special like that. Me and less than 100,000 people on earth out of 7 billion. Lucky. This post is about luck. Obviously that statement up there was sarcasm but there are ways in which I truly am lucky. This past week has shown me that.
Monday I had my first doctor's appointment at Baylor since my diagnosis. My liver doctor, Dr. W, told me that it would just be a waiting game, watching blood counts and doing MRI's, until I was bad enough to be transplanted. She asked me if I was having any symptoms that I wanted medication for, I did not, then she gave me a great suggestion about a vitamin supplement and sent me on my way. I was not expecting the phone call I received on Tuesday morning.
Dr. W and my team of other various doctors had gotten a chance to look at my MRI from Monday and saw that my tumors are still growing. They all agreed that the tumors will probably become cancerous before I qualify as "sick enough" to get a cadaveric transplant, which would immediately disqualify me from getting said transplant because I have over a dozen tumors and the limit is 3. The only option would be a live donor transplant and a quick one.
Cognitive overload.
Once my brain starting working again I managed to answer some questions about possible donors and time constraints, then Dr. W said someone would be in touch in 2-3 weeks and hung up. They called a day later. In a period of 24 hours I now have a transplant coordinator, transplant nurse, and transplant scheduler (apparently I was listed as urgent). There are no words to express the sheer overwhelming...overwhelmment that I was experiencing. My head was spinning until last night when it suddenly stopped.
As I lay under the Christmas tree with my husband holding me in his arms I realized that I am lucky. I found the person I am meant to spend my entire life with whether it is short or long. He is willing to give half of his liver to keep me alive giving him the possibility of making the phrase, "you complete me" a literal one. It was not a coincidence that we met. It was fate, it was God, it was the chaos theory, it was everything all at once aligning perfectly to make every single horrible thing in my life mean nothing in comparison.
That is luck and that is love. We will get through this together as we always have with a veritable army of people lifting us up and pushing us forward. We are lucky to have you.
The next step is waiting on some paperwork then I will have a week of testing at Baylor. Once my testing is finished they can begin testing donors which is another couple days worth of tests. Walter is a medical wonder and I'm sure he will pass but if anyone else would like to be tested let me know and I'll get you the information. I'm going ask around for some locations to host a blood drive because it's honestly all I can do to give something back to the world that is so generous to me. I hope you all have a great week and thank you for always being there for me.
"We make a living by what we get, but we make a life by what we give."- Winston Churchill
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