47… long gone!

Two days ago on Tuesday, I had my 2nd clinic appointment. Traffic was horrible, we woke up at 5 and didn’t get there until 9:30am! 4 1/2 hours of traffic… I got my 47 staples, slowly but surely, removed!

The doctor was a little worried about one of my labs. My alkaline phosphate has jumped 40 points since I have been home from the hospital. Alkaline phosphate is a liver function lab. He said it could either mean rejection or regeneration. I say it is the latter and not the former! But he said they are going to keep a watch on it. My TAC level was a bit low again at 5.7. They increased my anti-rejection medication, prograf, again! They have increased it every week since I have been home. Prograf is so hard on the kidneys, they want me to drink 64 ounces of water a day! Do I look like nemo? I don’t think so! The doctor was very impressed with my progress. Instead of going back next week like I thought, they told me I don’t have another appointment for a month! I am free from San Francisco for a whole month!!

I am finally feeling better, I have my energy back, it may not be a ton of energy but I am able to get up and do things again like I was last week. I think it may have been a bug going around. My brother was totally exhausted too for no apparent reason and with no other symptoms. Oh, I have some more good news!

Two nights ago I slept on my back (not propped up on 50 pillows) for the first time! My back pain has been horrible lately (my body/muscles were totally relaxed for 20 hours on a hard table… I am sorry back!). Other transplant recipients told me to try sleeping on my side. So last night I slept on my side! I think I need to make a post with pictures on how to do this, it took me 10-15 minutes to figure it out haha! It did hurt my incision a little though, but my pain pills cover incision pain where as they don’t touch my back pain, so it was worth it, and it did help take some of the pressure off of my back. Though, doctors and transplant patients say the pain can last up to 6 months. Others have suggested acupuncture, stretching and standing up straight regardless of incision pain. But, the good news is that I made progress.. sleeping on back, side… 3 weeks ago seemed impossible!

I almost forgot… so my staples are gone! It was slightly painful/uncomfortable. A few, 5-6 of them, hurt though because my skin had healed around them and my Nurse Practitioner had to yank them out. She is so sweet though, I really like her. I was so thankful Coleman was there to hold my hand. My staples were so red and angry, especially on my right side, that is the only place I have a “real” scab, the rest are very superficial scabs. They said I have healed up really well.

I want to take another picture soon of my awesome rainbow scar. It looks so good without the staples. It seems like it has been more than 3 weeks since I have had my transplant. The hardest part has been the expectations from myself and others. There are good days and bad and I pray that the good would soon greatly outnumber the bad. But even my bad days are good because I am so blessed.

PRAYERS:
If you could please keep my niece Bella in your prayers. We recently got some very difficult news… that is all I will say for now until we know more. She is so sweet, beautiful and she is only 2 months old. She needs a miracle though. And I know first hand that miracles are God’s specialty. Also, if you could pray for my back pain and that Kelly’s incision would heal up faster, she is having some issues with it. We are only looking like slight hunchbacks these days though, so that is good news.

POST TRANSPLANT PATIENTS:
For those who are reading and are post-transplant… I will try to explain how lay on your side to alleviate back pain. First lay onto your side on a big giant pillow (laying straight back hurts those stomach muscles that were shredded). Then roll onto your back. Pick a side (no, the liver side shouldn’t hurt more than your left), whatever side is more comfortable for you. Then put a long/big pillow pushed up against your back. Hold onto bed and pull yourself onto your side. Put a firm pillow between your knees and have a pillow or two to cuddle with. That is the art of sleeping on your side post-transplant. I am sure I confused you, honestly it will probably be different for everyone but I still would have liked for someone to try to explain to me how to do it.

Miracles & Updates

All week I have been wanting to write about how much God has been involved in not only the big decisions (will I live or die, will I get a new liver, etc) but the every single day little things. God knows I am a person that is very easily delighted and pleased. A good cup of tea or a nice rich fancy chocolate can make me smile for hours. A spray of lavender spray and I am happy girl. Simple things. Good people. Good food. Good family. Great God. That is my life.

First, I am not sure if it was thoroughly explained what exactly went wrong in the transplant of Kelly’s liver to me. If not, I am here to clarify… well, at least what I remember through drug-filled, emotionally plastered memories! I remember waking up from the first transplant and someone telling me that it hadn’t worked, that I was status #1 in 5 western states! That means all possible liver transplants went to my case first… they told me that because of what happened they were going to be very picky. The surgeons felt so bad, you could see it on their face, and these are the most awesome, kindest men I’ve ever met. I absolutely love Dr. Roberts, Dr. Mark, Dr. Kang, Dr. Trevor, Dr Tascae, Dr. J, Dr. Bian, Dr. Fix, Dr. FINER (there is no other finer anesthesiologist in the country, literally hahah), etc…

So basically, in taking Kelly’s smaller, left lobe of her liver, she had two arteries instead of the typical one. They tried to take these two and make them into one, to match/fit the piece of artery that I had left in me. This didn’t work. It just kept pulsing blood everywhere. Then they called in plastic surgery, took a vein from my leg (I am thinking plastic surgery probably didn’t take it out, because it doesn’t look so great)… but of course, that wasn’t the concern, making the liver work was! They tried to work my vein into the two, to make it strong enough to support the blood flow of the liver, it just wasn’t working. They said I basically had 3 weeks to live before my bile ducts would die off from the lack of blood flow. So I had Kelly’s awesome piece of liver, the arterial connection failed and wouldn’t carry the oxygenated, cleaned blood that I needed from the liver to the rest of my body.

That is when they put me on status #1. I woke up from that surgery feeling pretty dang amazing. I had a liver in me that was kind of working a lot better than the one I had before so I did feel a little better, even though it was killing me. That is when God started to come into every part of the picture…

Let me first say, the worst part of this process, was the IV sticks, I am black and purple from the tops of my arms down to my fingertips. They had to start a central line in my neck for IVs, etc. It took them QUITE a long time and I needed a few breaks to breathe. I actually had a really awesome CD of guided imagery, breathing techniques, positive affirmations, if you are a skeptic of these things, just trust me, it helps so much, it is one of my biggest tips if you are having any type of surgery.
http://www.healthjourneys.com/product_detail.aspx?id=29

Anyways, so my veins sucked, I woke up from the first surgery with 2 IVS in each arms, a central line coming out of my neck, which let me tell you, before surgery, the idea freaked the heck out of me. It actually became my favorite place to get an IV into because all the other ones burned too bad. Central line… that is the real deal! Granted, they still didn’t know how long it was going to take to find me a new 2nd liver and there is a risk of infection with an IV in your neck, so the nurse had planned to take it out 4pm that day. It was kind of going to be a big deal, they needed to lie me flat so that air/infection didn’t get into my heart, it was actually sutured in place… so it wasn’t very fun in coming out. I was NOT looking forward to it, besides then I was also left with only painful arm IVs. This was on Tuesday, August 16th. My nurse took her break around 3. This is where it gets good people… =)

A new transplant surgeon that would be joining the team that would be giving me my 2nd liver, came and introduced himself at 3:10. He said they had found an absolute perfect match of a liver for me! A young 20-something year old man had tragically lost his life and left a very, healthy and happy liver behind to save someone elses life… that life would be me! Handpicked by God! And he said they would be getting the liver around 4am! So that meant I was keeping the line in my neck, no need to start another hole! I was so happy! Actually, I was in quite a bit of shock. The last 2 days, which had been fairly easy on me, comparatively speaking to the 2nd transplant, we had been talking about these chocolates we had found a few weeks before at The Ferry Market Place in San Francisco (I am a fan of the cooking show Giada, she inspired me to go here after watching her visit the ferry market place). A few weeks ago, Coleman and I had a nice date to the Ferry Marketplace where we discovered the most divine thing I’ve ever tasted. Recchiuti Confections has the world’s most amazing french sea salt chocolate dipped caramels! It’s like liquid heaven. Seriously, crazy expensive at $24 for a 16 piece box of chocolates, but you just can’t put a price on liquid gold, just too hard I tell you :p

http://www.recchiuti.com/108.html

http://www.recchiuti.com/268.html?area=03

So, I had sent Coleman and his mom (who flew all the way here from Georgia to come be with me!! She is so sweet) to go get me a box of these chocolates because I didn’t think I could go into another surgery without the strength of my liquid gold. Even if it was just one piece. I know, I’m ridiculous. It’s perfectly ok with me! And apparently, God is a fan too because he let the phone call come in about the liver late enough in the day, that they doctor let me wait until I got my chocolates to be NPO (no food/drink for surgery) at 8pm. So Coleman got back and before my surgery, I got to have my liquid gold. I call this my 3 fold miracle. Perfectly healthy, awesome liver match (so blessed!), I got to keep my central line and I got to eat my chocolate. August 16, 2011 was a great day. Unfortunatley, it was also a tragic day for a family of a young man and I pray that God would comfort them and bless them incredibly, I just want them to know I will live every part of life to its fullest, not only for him but for my sister, who selflessly went through this crazy process. I am still taking time to process that whole situation, please pray for me, Kelly and that young man’s family, that everything would be easy and God would heal all wounds (including a broken heart, losing a son, a brother, whoever this man was that was selfless enough to give his liver to me, giving me a 2nd chance).

My oldest sister, Kristin, had been trying to come see Kelly and I since the day of surgery. Things just kept happening that stopped her from coming though. One day she was way too exhausted, another she couldn’t get a baby-sitter, another they tried to come but the car broke down! When I called to tell her I was getting a new liver that night, she decided to come…. and you know what! I got what I wanted again. Ok, when you are in the hospital, with pretty much no dignity left, its the little things that make you feel better. A gel pedicure that lasts 3 weeks, that happened the day of surgery before we came to the hospital on Thursday. It’s pretty. I also had wanted my hair french-braided because I knew I would be in bed for a few days after transplant. Well… I got it braided for my 2nd transplant! That night when Kristin was finally able to make it, I got my hair braided. Simple things make me happy. It was funny because Billy had also told Kelly that he wasn’t coming that day either, but he took bart to SF and had tried waving down 2 taxis with no hope. So he was walking the long 3 mile walk towards the hospital from bart station. As Toby, Kristin and Bella were on there way up Toby kept saying Kristen look at this and look at that but Kristin kept saying I need to focus on driving and then minutes later she goes look there’s Billy. They picked up Billy and took him to the hospital. I have also been able to share my “liquid gold” with most of my liver team. I have got some pretty funny reactions, Dr. Mark had the same exact reaction as I did (OMG THATS AWESOME Mmmmmmm cloud 9 in my mouth). Dr. Finer told us about a journey that he went on to a chocolate farm in Peru and how amazing the chocolate was, he really enjoyed it as well.

Thank you so much for your prayers obviously God has been listening and been on this journey with me every step of the way. I don’t know what I would have done without his presence to keep me sane during this insane time. I will update again soon with pictures and an update on Kortni.