My first appointment today was at 7am to get a Glofil (kidney function) test. Or at least my appointment was at 7. The lab tech's first appointment was at 7:15. I always say how great Baylor is but the Nephrology lab is a horrible place filled with pain and rude people. Those lab technicians are the family members you never invite to dinner because they will tell you to your face how much of a failure you are while they hold a bottle of Jack Daniels with their pants undone.
After she finally showed up she forgot to fill out my paperwork and the doctor injected the medicine before she verified the basic health requirements such as, "Are you pregnant?" and "Have you had a kidney transplant?" Luckily both answers were no or she would have been in serious trouble. There were two chairs in the room with me but she told my Dad that only one person could stay in the room with me. She took blood like she was playing darts while drunk at a bar. The blood was drawn three times 15 minutes apart and in that short time span my first sample site was bruised. Then she bruised me again 15 minutes later. On the third time she dug around for five minutes, made my second site start bleeding again and when I winced she said, "Oh pssh, this is the easy part." NO. Peeing in that collection hat is the easy part. You stabbing me repeatedly in basically the same place 3 times hurts a lot, let me do it to you.
Okay I feel better now so lets move on because the rest of the day was amazing! I saw my Hepatologist, Dr. W, who told me that this transplant would not only cure my disease but fix the other problems the disease caused. My enlarged spleen will shrink dramatically and my esophageal varices and portal hypertension will go away and might be enough to let me have a child someday. The chance of my disease coming back over time is only 25% but I'll do everything I can to prevent that.
The last person I saw today was the social worker who told us that the initial surgery cost will be more than we expected (uninsured it would be almost $600,000! can you believe it?) but the long term medications will be more manageable than we thought so everything kind of evens out. Every day I spend here I get more and more nervous. The reality of the situation is scary. I have about a 60% chance of rejecting a new liver but they have an 80% chance of fixing it if it happens. Even with all of this I can't stop being hopeful because my life could be "normal" with no health problems. I don't know what it feels like to be normal so I'm excited about the thought.
I'd like to say thank you to everyone who is sharing this journey with me. I am very grateful to have you with me whether it's through Facebook, phone, or even just positive thoughts in my direction. I am especially grateful to my family and friends who have begun fundraising in my honor to help cover the financial and spiritual aspects of the surgery. Having a chance to live a healthy life is all I've ever wanted and I will live every day with hope and faith because of you who support me so wholeheartedly. Thank you.
"Encourage, lift, and strengthen one another. For the positive energy spread to one will be felt by us all." -Deborah Day
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