Been A While....

It has been over a week since I posted anything.....i suppose both out of sheer lazyness and exhaustion. I have been going out a lot more here recently. I have decided that since I am going to be laid up for a few months at least, I better get my fill of going out before I go under the knife. I have been having tons of fun though hanging out with friends, making new friends, just doing things that I always told myself I was too tired to do. I am still way too tired to do these things, but i am making it.

Anyways, what this blog is about is the progression of my journey through the long process of liver transplantation. Anyways the past couple of weeks I have had more tests ran on me. This has been the case for the past four years so I am okay with them. I did find out last week that I have been approved by the transplant team to go on the transplant list . I am not currently on the list but once all of the tests are cleared and paperwork is finished i will be placed on the UNOS transplant list. Once I am on the list, things become a waiting game for real. At any moment, I could have to go to Emory and be prepped for surgery which may or may not happen. I have been warned that this game can be cruel. I could get the call for surgery, be prepped, and then the doctors turn down the liver, and there will be no surgery. I could also get down there and someone else receive the liver. Crazy situations that I hope I don't have to go through.

I have not been nervous about any of this lately. I think going out has allowed me to keep my mind off everything that is going on. It is funny how just being around friends can change your outlook on hard times. For the first time in a long time, I feel that I have people around me who actually care about me for me, even people I haven't met. For a long time, I have kept people at a distance because I was afraid of how they might take me and my condition. I have found lately that if I open up to people they will accept me as I am. I have ran from friendships in the past because of being afraid of how people look at me and my condition. I have come to terms with my condition and the fact that it is a part of me, but my condition does not define me. If people really want to get to know me, and what I have to offer, they will look past the doctor's visits and the numerous IV marks on my arm. If they don't want to get to know me that is fine as well, I do not have to be liked by everyone. I am me, take me as I am, or leave me alone. Okay, I am through ranting. I am thankful for my friends, both new and old, those close and far away. Thanks for the random phone calls, the night's out on the town, the nights sitting at the house, even the nights on AIM, and the numerous other things you do that prove your friendship.

IV Stress Test....

Friday, at Emory, I completed the strangest test I have ever been through. I knew Friday morning I was going in for a stress test. You know, run on a treadmill, get your heartrate up, EKG, blah, blah, blah.......or so I thought. I walk into the room where the test was going to be conducted and I find out they are going to give me some medication through an IV that will speed my heart up. I also find out that because I am so young they are going to have to speed my heart up....way up. My resting heart rate was about 52 beats per minute in the room and they had to get it up to 166 beats per minute. That is more than tripled! I thought, "Okay, I am an athlete. I can handle this." They gave me the medication in two minute intervals which slowly made my heart rate climb. For about 10 minutes I was fine, my heart rate was about 110 and I was thinking it wasn't so bad. At this time, I felt that i should be breathing harder because my heart was beating so fast. Another 10 minutes later, I was getting light headed and having to force myself to stay calm as my heart was literally beating out of my chest. I could feel my heartbeat in my arms, my legs, my feet, pretty much everywhere. I still wasn't breathing hard and my body was not getting the oxygen from my lungs that it was requesting, which i suppose explains some of the lightheadedness. I guess the nurses could see the concern on my face because they kept telling me it was almost over. They said that at least 25 times as they pushed more medication in me that continued to speed my heart up. After the test was over, it took about 30-45 minutes for my heart to really calm back down to normal. After about 10 minutes, my heartrate was hovering around 100 beats per minute and they let me go. I felt like I had just run a marathon and did not move an inch. My mouth was dry, I was lightheaded, and my heart was still pounding. The effects lasted for about another 30 minutes. At least that was as long as I made it before I fell asleep in the car. I was looking forward to the good jog on the treadmill but instead got speed in a syringe.

Throughout this process I am beginning to expect less and less normality. I was ready for some exercise but was in no way prepared for the workout I received.

Tests and more tests....

Been a few days since I have posted. I haven't had much to say and I am not sure that I have a ton to say tonight. I spent Thursday and Friday being worked up and over for my liver transplant evaluation. I feel like a pincushion. Blood test after blood test, stress test, pulmonary test, pee in a cup, pee in a jug, needles, needles, and more needles. That is all i remember from the last part of this week. Some good news came out of it though. I was told that I am a perfect candidate for a liver transplant. Once the paperwork is completed by my nurse coordinator, they will bring me up in some sort of meeting that will officially put me on the transplant list. Should take 3 weeks to 2 months, depending on "whatever they deem necessary." The average wait time for a liver in my region is about 3 months(so I was told) and it could go quicker than that. At the same time, it could take longer than that. I am roughly estimating transplant day at about the middle of July, give or take a month or so. Honestly, I feel calmer knowing that it is going to happen than I did when it may still be a possiblity. I found out that unless things change drastically I will not be going through the live donor process. I will be waiting on a cadaver, unless something changes drastically. This makes me more comfortable in that I dont have to ask my family to risk their life for me, although I know they would all do it in an instant. I have the utmost respect for anyone who would even consider risking their life for someone else. (Becky, that was for you.) This has been my past few days in a nutshell. I'll probably write more later when I am not so tired. Just don't feel like writing much tonight.

It's moving......

I got the call from Emory I have been waiting on today. Again, mixed feelings came with the phone call. As excited as I am about getting better, I can't help but feel my heart drop everytime I get news about its approach. I will be meeting with the transplant team for my evaluation and testing on February 9 and 10. I am not sure what is going to happen on that date, but I know the date. The lady that I talked to said that she was sending me a package via FedEx detailing what will happen and some of my meeting dates. It should get here tomorrow, until then we just wait some more.

I think I have come to the conclusion that I am excited about getting the transplant and feeling better, but I am nervous about what the recovery is going to be like. I have found another blog on Blogger that is the story of a lady who just finished being a living donor to her brother. It has been a big help in knowing what to expect. The site has helped assure me that some of my thoughts and worries are not crazy, but a little bit normal, at least.

My nerves about the process and recovery trump my excitement at certain moments, this being one of them. I am currently trying to clear the fog that is in my head about what is going on. Once that clears, I may be able to type more. Until then.........

Got a call today....

I got a call today from my insurance company saying that I have been approved for an evaluation and transplant procedure. As I was talking to the insurance lady today, it sort of hit me that the ball is starting to roll. For a few minutes, I got nervous. Up until today, it has seemed like something that is way off. I guess it is beginning to hit me that this is actually going to take place. There is a lot of stuff on my mind tonight....the transplant, school, my scar, relationships, my life, friends, people who care, how much is my life going to change, really too much to begin talking about......it is all jammed up there. Maybe some of it will begin to dislodge soon. Anyway, back to the call and what is next! I am now waiting on Emory to call me to set up my initial evaluation. After that, the process should take off according to the lady I talked to today. Ummm, for once, I am short of what to say so I guess this is a good time to stop for this post. Until next time!

Insurance...

Waiting, waiting, waiting. That is all i feel that we are doing. Last time we went to the doctor they said that we were going to attempt to have the transplant at Piedmont Hospital in Atlanta. My insurance doesn't cover that hospital, so we are off to Emory. Now we are just in the waiting game over there. We are currently waiting on my insurance company and Emory to get everything worked out financially, because everyone knows that is the important part. I am expecting a phone call by the end of the week from Emory, but I also assumed that last week.....and was wrong. We are just sitting on go.................. waiting, waiting, waiting.

Thoughts on the transplant....(VENT)

This is a venting of my thoughts....so if you want only updates....don't read this.

The news of a transplant is bittersweet. I am excited about it on one hand, and terrified of it on the other. There are so many postive things that I can see coming out of it and very few negative things. The problem lies that they negative things are huge in my opinion.

In the excited hand, I am ready to get better. I am ready to have energy again. I am ready to wake up everyday and not wonder if people are going to notice my jaundice. I am ready to wake up and not wonder if I am going to get sick, or be in some pain today. I am ready to be able to walk with my head high with the level of confidence that I held before I was diagnosed. I am ready to be told that I look good and people mean something other than I look better than I did last time they saw me. These are a few of the things that I am excited about when I think of getting my transplant. This will be a world of change for me and I can't wait until these things are a reality.

In the terrified hand, as vain or fickle as it may seem, I am most scared of the scar. I have always taken pride in the way I looked and am self-conscious enough about the four small scars on my stomach from the gallbladder surgery. I know that it is pride and just as people have told me, I know that I should not be so prideful about a scar. I think that to be successful you have to take pride in certian things, and the way that I have taken care of my body and myself is one of those things.

Dont get me wrong, there are other things in which i take pride. Most of my pride lies in my faith, my family, my life, my friends, and my career, among other things. Don't get me wrong, having a scar will not put me in a straight jacket or on suicide watch. I do worry about my reaction to a scar that runs the length of my ribs.

Being the self-conscious person that I am, I know that I will be worried about what people are thinking if I take my shirt off at the pool or the beach. I am certain that with my new found energy I will take even better care of my body. I just wonder if I will be able to take the same amount of pride in it as I do now.

The postive outcomes far outweigh the negative when it comes to me getting the transplant, so of course I am going to go through with it. I just wonder how I will handle the scar after I am healed. I guess these are things that time will tell, and I can only rely on God to come through and give me the peace he has always given me since I began my fight against PSC. He has been the very present help that he promised he would be, so I'm just going to keep trusting him knowing that no matter what He will not give me more than I can handle alone.

These are thoughts that are hard to talk about so I write them. Makes this whole process a little easier to stomach.

Almost there ........

Since the diagnosis, there has been little excitement. I have been through a barrage of tubes ran down my throat, MRIs, CAT scans, and any other tests you can imagine.

I have since been turned over to a hepatologist, or liver specialist, who takes care of me and the PSC. I have changed hepatologists a couple of times for reasons that I cannot remember. I am currently with the original hepatologist to which I was referred after my hepatologist at Emory University left for Miami.

For the past three and a half years, I have been taken care of through a medley of medicines and ERCPs. My last appointment with my hepatologist was on December 27, 2005. I learned in that meeting that they have done all that they can do and I am to the point to where my hope lies with a liver transplant. This is where we are at this moment. Working through paperwork and insurance trying to get me on the liver transplant list.

Now that you are up to date, the posts will probably be of an update on where I stand in the transplant process. There will probably be some posts also about feelings and thoughts going through my head about my life as well as the transplant process.

A little pain brings a world of relief....

Once I was referred to the gastroenterologist, things began to move in a more positive direction. The doctor listened to my symptoms, took a gallon or six of blood, more CAT scans, ultrasounds, and MRI's, and finally the one test that sealed the deal, a liver biopsy. If you have never had a liver biopsy count yourself lucky. I'll let you in on my fun! After a MRI, a couple of dots from a Sharpie, and a novacaine shot to my ribs, I was ready. The equipment I was stabbed with was scary. It was a foot long needle with a crank at the top. It looked like something that would have been used in the movie, Hostel, to torture an unsuspecting visitor. Though they gave me a local anesthetic for the procedure, there is something about watching a foot long needle go into your ribs that is painful. The pain wasn't sharp, more of a dull pain, that I suspect was more psychological than actual. I knew that somewhere under the anesthetic, this was hurting....a lot! When that was over I laid in the recovery room for an hour or two making sure that there was no internal bleeding or other complications. Now we began another fun game of "Waiting." Within a couple of days, the doctor called and said that the diagnosis was Primary Sclerosing Cholangitis, or PSC for short. This was December after my gallbladder was removed and it was great to finally have a name. You would never believe the relief that it brings to finally have a name for something. The symptoms didn't go away, I didn't get better for the time being, but at least I could go home and Google the blasted thing! With the name of the culprit being known, I could begin my own investigation and that felt like a car had been lifted off my chest and mind. Until next time.....

The story continues....

Whew!! I woke up from the first surgery of my life, thank God! Everything from that morning was a blur and I only remember bits and pieces of people being there and things that were said. After the surgery, I had to stay in the hospital for three days. When they removed my gallbladder, they found some of my lymph nodes had marbleized and hardened around my gallbladder. They took all of those lymph nodes and a couple from under my arms. After the surgery, the surgeon came in my room with some bad news. She told us that she was 90 to 95 percent sure that I had either leukemia or lymphoma based on what she had seen before and the appearance of my lymph nodes. We spent two days praying and worrying that I had leukemia or lymphoma. Those were possibly the scariest two days of my life sitting, waiting for some news to confirm the fact that I had leukemia or lymphoma. The greatest news that I have received during the ordeal so far is that I, in fact, did not have leukemia or lymphoma. They ran numerous tests to try and determine what caused my gallbladder to shut down and my lymph nodes to marbleize. After numerous tests and lots and lots of head scratching by the doctors, I was sent home without a diagnosis. I was referred to a gastroenterologist to try to determine what was wrong with me. Here is where my story begins to settle down so I'll stop for now. Check in later!