Captain's Log. Stardate, Friday Afternoon.

Welcome to the WORLD premiere of my first video log!

Pete and Repeat were on a boat...

     So it's been a long time since I posted, but not much has been going on. The holidays came and went and around the time of my birthday in Feb we found out that my insurance would not cover the transplant I need at the hospital I was going to. So now my husband and I are driving down Route 66 to Phoenix, on our way to the Mayo Clinic which is one of half a dozen places in the US where I can have the procedure I need.
     I have to redo all of the testing that I wrote about in December and then some. I am thoroughly unexcited. I will update if anything adventurous happens, but my bet is it will be more of the same: needles and scans.

Wasted time.

Today at 2 pm I got a phone call from Baylor saying, "Your live donor transplant was denied by your insurance company."

After two and a half hours I finally figured out why. Baylor has never been approved for live donor transplant from BCBS. They should have known this but they didn't and they wasted my time.

Since they decided to tell me at the end of the day on FRIDAY... I get to spend my birthday trying to find a new hospital. Starting over from scratch.

There are no words to describe how angry, disappointed, and terrified I am. I was so happy yesterday. I thought we were almost done. Now we're back at square one.

SIx Pack ABS!

     Today was a very great day here at Baylor! We started off the day in a group meeting with the other 5 people being tested this week. They talked about post-transplant care and finances and then they had a patient come in to talk about his experience. He had PSC just like me! He is in his 90's now and he kind of screwed up his medication so his disease is starting to return. It has been 17 years since his transplant. Seventeen years ago things were a lot less developed than they are now with transplants and the fact that he lasted that long with funky medicine makes me extremely happy!
     Recovery, however, I am not looking forward to. The donor just gets to peace out after about week or so but I get to spend three wonderful months in Dallas. The first 12 hours after surgery I will need help breathing via an oral breathing tube. I will also have two tubes in my stomach until I can prove to them I can eat and take medicine by myself. I WILL SET A RECORD!  They have no idea how long I've been taking humongous pills, so bring it! Those tubes are waaay not invited to the party.
I will also be restrained for a the first few hours so if you are one of the people planning to be there you should prepare to be a little weirded out. Most people stay a total of 7-10 days, the record is four. I'm going for four.
     The reason I have to stay close after discharge is because they will spend the three months post-op trying to find a combination of drugs that will effectively keep my immune system from murdering my new liver. Once they have made sure it will not get evicted I can leave.
     I also met one of 20 female transplant surgeons in the US. She is awesome. She told me the names of all the surgeons that could work on me and even though she said she was sorry that this was happening to me at such a young age I could tell she was excited to have someone so "easy" to work on. It was fairly evident in the way she said. "OOOH you're skinny!!! as she felt my abdomen. She also said "It's easier and safer to transplant fit patients. You should get six pack abs before I see you next time!" Well alrighty then. It's crazy person diet and work out time once we get back from this trip!
      The day ended with them telling me I don't have to have blood drawn again because my doctor did it in November which was wonderful news because both crooks of both elbows are purple, swollen, and almost out of places for sticking. So way to go Dr. W for being on the ball!
     Also, we made Christmas cookies and got ramen from the best Japanese place in Dallas, Tei-An which makes everything better all the time. :)

"It's no coincidence that four of the six letters in health are heal."
- Ed Northstrum

If it's so easy then you do it!

     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

Late to my own Funeral

     Today was the first day of my week long liver transplant evaluation and the first step in determining my placement on the waiting list. Let's just say that it started out a little rocky. What should have been a three and a half hour drive from OKC to Dallas ended up taking six hours due a nice thick layer of ice and two unfortunately positioned semis. Why the three trailer long UPS truck didn't put chains on I'll never know.
     Always one to be fashionably late, I showed up for my 8:30 appointment at 10:15. I cannot say enough how amazing Baylor Medical is. They accommodated us into the schedule and rushed me through an impromptu orientation before sending me off to the lab. A dozen vials of blood later I was off to my Tuberculosis test.
     We then met with a nutritionist who said I was generally much better off than most of the patients she sees and my healthy diet probably contributed to my lack of horrible liver failure symptoms. She recommended I try to quit drinking Coke and do a little more cardio. She thought that my choice of vitamin supplements was perfect and was generally impressed with my self management.
     Then, off to the EKG I went. That came back normal and so Day 1 was complete. The place we are staying is called Twice Blessed House and it's sponsored by the hospital. It's really nice and has a full kitchen/bath/laundry and I'm lucky to have my mom here to cook dinner for me!
     I'll continue to update throughout the week so you can all share in this strange new experience with me. I'm learning a lot and maybe you will too! For instance: did you know, that after a transplant, the recipient has to stay in the area for two months? I am not at all excited about being away from my friends for so long. Looks like I'll be getting a Skype account!

"I am not afraid of storms, for I'm learning how to sail my ship"
-Louisa May Alcott

Lucky

     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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