365 Days of Intestinal Failure
This journey has been full of so many phases. NJ tubes… TPN… coming on and off of Hospice… learning how to walk again… surgery after surgery. I sometimes find comfort when I am in the midst of a phase. It gives me a sense of normalcy among the chaos. About three months ago my sense of a phase was ripped under my feet. It has been a painful three months full of many questions. Why has my Chronic Intestinal Pseudo Obstruction progressed even more? Why has my small intestine totally shut down? Why has my ileostomy failed? Why am I so distended? Why am I still very weak? Why… It created the biggest question: What? What is next? What do we do? What is the next phase? I reflected so often on a day last summer where our lives forever changed. The medical team at Children’s Hospital of Wisconsin came into my hospital room and discussed my current state of health and what was happening. When they said “you have intestinal failure” it was something that instantly dampened everyone’s mood. We had spent months fighting so hard to regain motility and movement of my GI tract. It ignited a fire to continue fighting that has led us to where we are today. That same team of doctors have been working very hard lately. Murmurs of ideas floated in the background as we met with my doctors countless times, and they met among themselves countless times as a team. The end result of this brainpower brings on the next phase. One of our last chances… a multi-visceral transplant.
When Pseudo Obstruction becomes too far advanced and rips away the quality of life for patients it becomes a beast to handle. We have exhausted every option. Now we deal with the severe fact that my disease has progressed as far as possible. My team of gastroenterologists at Children’s Hospital of Wisconsin believe my best shot at a better life will be to see if I can be evaluated and listed to receive a second chance at life. I would need an entire new digestive tract. Stomach, small intestine, the list goes on. When my GI doctor told us this news, and said my surgeon feels the same way, I could not feel anything. I shed tears. Everyone in the room did. I shed tears because I felt devastated we were running out of options.
I shed tears due to worries. The process of being evaluated for a transplant can take up to a year. The centers that are specialized for complex cases are all far away… Pittsburgh, Cleveland, Boston. There is also the real and tragic possibility that a center will not list me, meaning I do not have another chance. A transplant means an entire lifestyle change, and it impacts everyone around me. That is what terrifies me the most, the impact this will have on my loved ones. It means a precious life passing away, and then a donor recipient receives the gift of their organs. Having a transplant essentially trades one disease for another disease.
Life is worth fighting for though. I want a second shot at life. I have a whole life to live, schools to graduate, jobs to earn, children to love, a husband to marry, a world to see… the list is never ending! And that is the way it should be. As of right now, living on TPN with the immense symptoms I deal with limits everything I do. The outings I partake in leave me weak and sweating in pain. It comes down to a question: Do we want to gear up and fight for the best chance at a full life? The answer is simple: Yes. I want to have a chance at truly living again. I do not want my free soul to be held back by this weakened body.
It has been one year. One year of intestinal failure. I never thought it would lead to me dreaming of new organs… I never thought I would be this sick for so long. As we head into this next phase of this battle, I am making a decision. Looking on this past year is full of emotions. It has been a very hard year, but it has been one of the most beautiful years. Battling organ failure has made me appreciate each moment that there is. I do not want myself to drown in my own sorrow. Until we begin the process of being evaluated I am making it my biggest goal of living. I am going to enjoy seeing friends, working hard on my school work and academics, getting ready for the upcoming school year, cuddling my dog, laughing, I am going to live. I am going to celebrate each milestone that comes. I am going to celebrate the holidays to come. I want to make more memories. Memories are my safe haven… I escape from reality back to my Make A Wish in Colorado, or to the beach in Florida, or to times with my family when I could enjoy food.
I may have intestines that have failed… the beautiful irony however is that I have a soul and team of supporters that are thriving. Thank you to each and every single person that has thought of us, donated to help us, prayed for us, send good vibes, smiles… I am scared for this next step, but I am so humbled for everyone that follows the story of my family and I. I promise to never give up, and to make every effort to live.
365 days of intestinal failure… 365 day of endless love