Introduction
I am writing this blog for a few reasons. The first is simply as a release for me. Trine was concerned that I do not have an outlet for my feelings and it has affected my moods, especially over the past weeks, which included a one-month stay in the hospital. She is right. My fingers are still numb from the swelling that happened because of all the IVs and blood draws in the hospital, so guitar playing is tough right now. I only have a couple people down this way that I consider friends and I haven’t been very social lately. Until yesterday, I had not done any exercise or anything to make myself physically stronger. I am certainly glad to now have that outlet. Last but not least, I haven’t done any writing since my transplant. I need this. While I had a relatively easy pre-transplant road, things have not gone as smoothly as hoped since my surgery. I will get into that a little later.
The second reason I chose to write this blog is to let my friends and family know what I’ve been going through on a deeper level. Some of this will be redundant, while other bits will probably come as a surprise.
Lastly, to all the people on Liver Families, especially the parents whose children are going through similar situations but are too young to adequately voice their feelings: I want you to know some of the thoughts and feelings that your child may be feeling. I want to get my thoughts down on paper while they are all still relatively fresh. It won’t all be pretty, but I am being honest.
Pre-Transplant
I won’t spend too much time on pre-transplant life because I have already written about it. I got sick last July. I thought that my liver just gave up on me after 26.5 good years, though looking back I could see that I had slowly been getting sick since 2000, my only visible symptom a small dash of yellow in the corner of my eyes. If you weren’t looking for it, you likely would not see it.
I was at the gym on a Saturday morning working out heavy when I began to feel…off. By the next day, I am laid up in my bedroom, vomiting, sweating profusely, my skin and eyes highlighter yellow and my head pounding with a ferocious pain unlike any I had ever experienced. Finally, Trine convinced my stubborn ass to get to the Emergency Room. I did and they basically dismissed my symptoms and gave me a pill that they give chemo patients to help reduce the vomiting. The next morning, I took the pill, threw it up immediately, and had my dad drive me back to the Emergency Room. This time, they had the foresight enough to call my GI doc and I was admitted to another hospital. I spent eight days in the hospital, felt much better, but it turned out my doctor did not know what had gone wrong and they had put a band aid on my symptoms, but by no means did they heal me.
Over the next few months, which included a move to Florida, things progressively got worse. My bilirubin (the amount of bile in my blood) continued to fluctuate, as did my shade of yellow. At times, my liver refused to break down protein and I got very sick. My symptoms included stomach pains, fevers, sweating, vomiting and generally feeling like shit. This happened probably every couple weeks. I also had a lot of itching, which is a result of the bile salts building up in the blood. By December 2007, I had no hair on my legs below the knees and I had blood stains on my work pants from scratching so hard. Thankfully, the itching calmed down in the new year, though it did not stop totally until I was transplanted. I wound up in the hospital a few times with cholangitis, an infection in my bile ducts. The bile would not flow right and I would end up sick with fevers again. However, for the most part I was able to work full time, feel pretty good and still be high up on the transplant list. When Dr. Tzakis would eventually take out my liver, he remarked that my vessels were “a rats nest” and had I not been called when I was, things would have gone downhill for me very fast. Any doubts to the severity of my condition, if I would get better on my own or if this transplant was really necessary, were put to rest then.
The Call
I got the call on May 23, 2008. I woke up at 7 a.m. and jumped in the shower, planning to wash up, dress and take our dog Niles out for his morning walk/pee/poop. Niles would have to wait that morning. Before I could even begin washing my hair, Trine burst in. “They’re going to call you!” I think I stopped moving for a second. I could barely stop the flow of emotions and thoughts. It didn’t feel real (and wouldn’t for weeks to come). I didn’t know what to do first. I finished up in the shower as fast as I could. When I got out of the shower, the Donor Desk had already called and Trine informed me that I had to be at the hospital for noon. She then began calling her family and friends. I did the same, all while trying to figure out what else I needed to prepare. Trine and I had been over this before, but now that it was real, it seemed to slip my mind and I felt like I was in a fog.
I signed onto my work computer and sent emails to my boss, forwarding various emails she and the team would need to finish up my cases. A part of me felt bad for dumping so much work on them, and would be unable to contribute during busy season, but I had to put those thoughts aside fast; I was getting life saving surgery and that trumped my 9 to 5 for the time being.
Next, I had to prepare myself physically. Trine informed me that I would be shaved from “neck to knees” in order to perform the transplant and suggested I save the time. She ran to Winn Dixie and grabbed 2 tubes of hair removal cream. Yes, this is a little bit embarrassing to admit, but I’m over it. I jumped back in the shower and applied the cream. Basically how it works is that you apply the cream to the areas where you want hair removed and wait until it starts to BURN! Then use the little plastic thingy they give you and scrape the hair off. If you’ve done it right, the hair will come off in clumps and make a huge mess of your shower. Keep in mind, I am still making and taking phone calls at this point, even while in the shower.
After shearing myself, Trine and I checked our “hospital box” to make sure it was complete. This box included maps of the Jackson Hospital area, as well as drinks and snacks. It was more for Trine and my family than me. I couldn’t see myself eating crackers in the too near future. But we had that covered, too. There were a couple containers of Gerber baby food, too. They went uneaten.
