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!



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!

Four short years ago....

This is my post to update you on how I got to where I am. Most of you know my story, but I am going to tell this for my new found friends or for the unexpected visitor who may have stumbled upon this blog. The saga started a short four years ago.......It was the end of August, 2001 and I had been having some severe stomach pain for about three days, but being the epitome of stubbornness, I never told my parents or anyone about it. Surprising, I know!! Every time I would eat, I would get sick and the pain only continued to get worse with every meal. Finally, my mom saw me crouched in pain on my bedroom floor and she proceeded to question the life out of me about what was wrong. (She is a good mom, that is what they are supposed to do, right?) Continuing to be stubborn, I told her that nothing was wrong and I would be fine. About three hours later, in the most intense pain I had ever experienced, I was being taken to the hospital by my mom and dad. After too long in the emergency room, I finally saw the emergency room doctor, had some x-rays, a CAT scan, an ultrasound, some painkillers and sent on my way. Within the next few days, I was back in the hospital having my gallbladder removed in an emergency surgery........no bueno.....no fun.....really scary!!! I'll continue later....stay tuned!

Welcome to My Hepatic Times

Welcome, y'all, to my blog about my life with a liver disease known as Primary Sclerosing Cholangitis, or more easily known as PSC. This is my first experience with blogging but I figure that it is an easy way to keep people informed without me having to repeat myself a few hundred times. I plan on posting on here some background information to get people caught up with me since I was diagnosed with the disease about four years ago. The posts will probably get shorter as I finish the background info and people are up to date with my situation. Hope you enjoy!