I lay here in this hospital bed feeling chained down by all the tubes and the wires watching the white fluid that will be my savior and possibly my killer drip into my chest, and though I smile I want to cry and run out of this hospital never looking back. I do my best to focus on the fight, telling myself to smile, keep my sense of humor, and stay positive. There is no point living in fear or throwing pity parties crying, "Why me" into my puke bucket, not to say I haven't had those moments because there have been plenty. I have just learned that focusing on the fight is way more productive than focusing on dying and the fears that come along with it.
     I can't hide it tonight though, I am not as strong as people give me credit for, and this is one of those times it has all come to a point. I keep smiling at the doctors and nurses all the while my thoughts are racing, despite a very high dose of dilaudid sleep comes in short spurts. I should be relieved that I am finally getting TPN, that I will no longer be starving, I will slowly get my strength back, the doctors have opened their eyes to the severity of the situation, and in all honesty, I'm terrified. I know the risks of having a central line, how dangerous infections can be, the risk of blood clots, and many more risks that are neatly listen in a little pamphlet you get when they place the line, and TPN causes all of these risks to increase. I am not naïve to the fact that infection is the downfall of many who have lost their lives with this disease...central line infections, and I've already had five.
     GI has declared me surgical, there is nothing they can do from their side anymore. We attempted a last shot medication last night that didn't even make it to a second dose after making me very sick and causing my blood pressure to bottom out. It isn't as if I expected the medication to be that helpful, it was a long shot from the beginning, but hearing GI service declare they had no recommendations hit me harder than I thought. I am now dependent on IV nutrition until transplant time comes.
     From now on we will be on heightened alert for infection, we watched closely before as we were instructed to do when dealing with a central line, but now the danger goes up. TPN is like food for the bacteria once it enters the blood stream and often causes it to back up in the heart, which can cause endocarditis (can be fatal). Sepsis can turn fatal at any point for anyone, especially someone who is already in a weakened state. I can still picture the doctors back in May standing at the end of my bed telling me that my fever was still there and my blood pressure was beginning to fall. They informed me that if things didn't get better I would be taken to the intensive care unit where there was a possibility I could stop breathing or worse. I was blessed that the medicine started to work, I remained on the step down unit where ICU patients generally go after they improve, the unit makes sure nurses have a smaller patient volume...more attention to give to their patients. After two weeks I wheeled out of the hospital in a wheelchair that was to become mine since my strength was pretty much gone, I had a brand new line, and had to continue to run IV antibiotics and antifungal medicine at home. I have friends that have never left the hospital after the kind of infection I had, they lost their battle, and it scares the hell out of me.
     I know that I probably won't live to see my son get married and have grandchildren to love on, but I won't give up the fight to see as much of his life as possible. I'm lucky to have each day, but I'm scared. I am twenty seven years old and I would be lying if I said that I am at peace with dying because I have every intention to fight for my life...if the Lord wants me He is going to have me kicking and screaming the whole way. People think I'm strong, but I wrote this to say that I'm really not. I am doing my best to survive and I'm a fighter, but I have my weak moments. When you are fighting a disease like this it isn't about doing things that you want to do, I do it because I have to so I can survive and increase my quality of life. I pray everyday for my friends who deal with the same stuff I do everyday while fighting this monstrous illness, praying we find a cure.
     When I started this blog I was not having an easy time, struggling not to fall into the fear, and then the door opened with my nurse bouncing into the room. I decided to take a break, which turned out to be very revealing and helpful. She asked me questions not only about my past of anorexia but also about the gastroparesis and intestinal failure. She admitted that she knew very little about gastroparesis and was more than interested in hearing me explain my experiences along with talking about my fellow GP sisters and brothers. It was that conversation that renewed my fight, not only my own fight, but a fight to raise awareness so no more of my friends die because of this disease and lack of treatment options. There is so much research done when it comes to cancer and other well known diseases, and with the research comes the awareness...cancer walks, fundraisers, and much more done in the name of raising money for research. Do you the colors we use for Awareness of Digestive Tract Paralysis? Everyone knows what the color pink stands for along with red...breast cancer and AIDS awareness. We have to do better, we have to work together to get the word out. Research means a chance for us, a chance for young mothers to see their babies grow up, kids and teens who suffer from DTP to enjoy school, go to college, and for all of us to live a life free of hospital beds and pain. I won't give up, I won't let this disease win, I will smile when I want to cry, when they tell me I can't I will show them I can, and I will fight for those who can no longer fight for themselves. This blog started with me feeling depressed and defeated, and it will end with my spark being renewed, refusing to give up.