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Apparently, it's not a quick, easy process to get added to a transplant list. I spent two full days at Methodist Hospital where I'm pretty sure I was the only person under the age of 60 in the waiting room. I saw TWO people on ventilators. All day people kept telling me, "You're too young to be in here". Not knowing how to respond to that comment I would just smile and say "I know, right?!" When I got to Methodist on Monday I had a transplant orientation class of sorts. It was a high level overview of what the whole process looks like and what I can expect to go through. Then I met with a financial advisor to talk about payment which was super encouraging. I basically have AMAZING insurance coverage through my current employer and will be paying a lot less than I had thought. It was so relieving, because financial stress is pretty much the last thing I need right now! Next, I met with a liver doctor, social worker and dietitian. Everyone was really helpful, and I left the hospital feeling as good as can be expected about the whole process. The next day I had to get several tests run on my body to check the overall health of my heart, lungs, etc. All this to say, I found out I'm pretty much as healthy as they come, which just increases the irony of this whole situation, but also confirms my belief that God has his hand in this completely and for some reason picked me to go through this. Obviously this isn't what I would have chosen, but I've already seen him do so much in this situation that I'm truly thankful He is bringing me through it.
Okay, so I'm going to attempt to explain how the liver transplant list works. If you get confused, I apologize. My medical knowledge is lacking as a former finance major. Here's how it works... to determine your position on the transplant list, you are assigned a MELD score (Model for End-Stage Liver Disease) based on how well your liver is functioning. The MELD score takes into consideration a measure your bilirubin levels (how well your liver is excreting bile), INR (International Normalized Ratio, which has to do with blood clotting factor production in the liver), and creatinine levels (a measure of kidney function which is often associated with liver disease). MELD scores range from 6 to 40, with 6 being healthy with a properly functioning liver and 40 being the absolute worst. Basically, the typical person who needs a liver transplant has a very late stage of liver disease, predominately from alcoholism. I do not fit this mold, because my liver functions are great and despite the cancer, I have a very healthy liver. Because of this, I was given a MELD score of 6, meaning I was at the very bottom of the transplant totem pole. Fortunately, they have started granting exceptions for people with liver cancer because a lot of times the liver will not show any signs of distress until the cancer has spread and it is too late. To appeal for an exception, all of the "evidence" of your case/condition is presented to a group of doctors who make the decision of whether or not to grant an exception. When a decision is made to grant an exception, your MELD score is bumped from a 6 to a 22. I just found out last week that my case has been approved for an exception which is SUCH an answer to prayer!!!
So, now my MELD score is at 22 out of 40. Every three months, I will get a bunch of tests run to see if the cancer has spread, and if it hasn't and a transplant is still a viable option, I will get 3 more points added to my score. So... its June... if everything checks out and the cancer hasn't spread, my MELD score will become a 25 in September and a 28 in December. The Houston region has been transplanting people with an average MELD score of 28, so there is a CHANCE I could get my liver as early as 3 months from now. It will most likely be around 6 months, which is still not that long. I was told to keep my phone with me at all times just in case! The thing I was the most relieved about was the fact that I don't have to get sicker to get moved up on the list! I was so worried that I was going to have a hard time getting transplanted because currently my condition isn't critical.
I've felt REALLY good lately. I am rarely nauseated any more. I've had some pressure/pain in my chest lately, which I think is attributed to the fact that my liver is enlarged and is pushing on my lungs a bit. My mom thinks it's because I was so stressed about the CFA (ridiculous finance test I took) haha. It could be a little of both, I suppose, but I don't think it is anything to worry about at the moment. I ran a little over 2 miles earlier this week and had to stop because I am out of shape.. which is good news... not the out of shape part, but the fact that I'm not stopping cause I'm sick! I think my biggest fear is that the cancer might spread to other places in my body. I try not to think about that a lot, but it does haunt me at times. I have an appointment in two weeks at M.D. Anderson with an oncologist there to see if there are any other steps they want to take to stop the cancer from spreading. Hopefully I won't have to get on any medicines that will make me sick! I trust that they know best though.
How you can pray:
-Total healing- God is still completely capable of this! I think I often underestimate the power of prayer and what He can do. How cool would that be if the next time I got a ct scan there were no tumors! It could happen.
-That the cancer won't spread anywhere else
-For my M.D. Anderson appointment- pray that I won't need chemo or radiation or anything that could cause me to be sick
-A NEW LIVER!! Pray that they find one for me :)
That's about all I have! Thanks again sooooo much for all of your prayers, love and support. I'm just trying to take things as they come at me now and feeling pretty positive and happy! My life is in someone's hands who knows exactly what He's doing.
"The pathway is broken and the signs are unclear.
And I don't know the reason why you brought me here.
But just because you love me the way that you do,
I'm gonna walk through the valley if you want me to.
Cause I'm not who I was when I took my first step.
And I'm clinging to the promise you're not through with me yet.
So if all of these trials bring me closer to you,
Then I will walk through the fire if you want me to.
It may not be the way I would have chosen
When you lead me through a world that's not my home.
But you never said it would be easy,
You only said I'd never go alone.
So when the whole world turns against me and I'm all by myself
And I can't hear you answer my cries for help
I'll remember the suffering your love put you through
And I will go through the valley if you want me to. "
-Ginny Owens
