A Tough Road for New Possiblites
Stomach, small intestine, colon, rectum. These organs are part of what makes up the digestive system. The digestive system is essential for survival; it provides nutrients and hydration that sustains life. The stomach digests and breaks down the food and empties it into the small intestine. The small intestine further digests the food and absorbs all of the essential nutrients. The colon absorbs fluids for hydration and stores waste, which the rectum does as well. Many diseases can impact and impede on the function of the digestive tract. Over a year ago I was diagnosed with Chronic Intestinal Pseudo Obstruction and Intestinal Failure. CIPO is considered to be a rare disease as there are only 200 cases worldwide each year. It is on the FDA’s compassionate use list for medications, a list used for life threatening and debilitating diseases. Intestinal failure is when life cannot be sustained through the gut, meaning no nutrition or hydration can be taken that way. In other words, people with intestinal failure need to be fueled through their vascular system. Before I had intestinal failure, I battled Gastroparesis and years of needing large amounts of laxatives before my diseases progressed too far. Now my digestive tract is constantly in a state of being “obstructed” without there being an obstruction. This means there is minimal to no motility, dilated bowel loops, distention, build up of fluid and gas, and relentless symptoms. I have been kept alive by the gift of modern medicine giving me Total Parental Nutrition (TPN) fed through my veins. I have been hydrated by fluids. These things have been the biggest part of my medical plan until this summer, when managing things became impossible. This summer, I stopped absorbing a majority of my medications, broken pieces of the prescriptions coming out of my G tube or ileostomy. My ileostomy was also declared to be in failure, not providing me relief, and now leaving my small intestine even more dilated and diseased than before. My stomach became even more loose and stretched out, leading to needing an NG for intermittent manual suction as my G tube can no longer drain the amount necessary. My distention pain became too severe and led to the need for narcotics to control pain so I could have some ability to function.
After the hospital stay that ended with a lengthy amount of time in the PICU, it was time to decide what to do next. When I look at my future, I know nothing is guaranteed. I have had quite a few moments on this journey where I was not sure if another moment would even come. However, I do know that the core of this fight will remain the same for the rest of my life. Since the beginning, my goal has been to strive to find the peace within the fight and to blossom and thrive, even under such harsh circumstances. These ideals have been the foundation of every choice my family and I have had to make. Some choices have been almost impossible, but the goal of finding peace and having a thriving soul have always guided us. After countless discussions, my medical team made the decision that it is time to refer me for a multi-visceral transplant in hopes of regaining quality of life, and extending my life. This decline in health, that has become a new baseline, was what pushed them to take action in order to ensure my future is available. In August I was discharged home and the paperwork was started. After lots of research, the University of Pittsburgh Medical Center was contacted and the conversations were initiated.
Since coming home I felt myself try to shut down the part of my mind that wondered about transplant. I had a hard time telling my close family and friends about it. I could not even tell others… It took me a long time to write a blog post about it due to these reasons. Transplant is an overwhelming thought. It is essentially trading one disease for another disease, a disease of having my immune system suppressed in order to not reject the organs. It is waiting for that life saving call. The moment I am transplanted would be one of joy and renewed hope for my family and friends, but would be a time of immense grieving for the family and loved ones of the possible donor. However, it could also be my renewed life. A successful transplant would allow me to come off of narcotics, eat food by mouth, wean off of TPN, tolerate enteral feeds, and most importantly: live. I could become free of my diseased intestines. I could work to gain back some independence. I could pursue my goals of finishing high school, going to college, launching a career, and even start a family down the road. Needless to say, since August the overwhelming emotions have been present as we think about the possibility of a transplant.
To be listed for a possible transplant, I need to be evaluated first. This evaluation will be two weeks of vigorous training. It will be physically and emotionally draining. However, this will be essential in allowing the transplant team to decide if a transplant is the best route, or if there is one more last effort they can make. Once the never-ending paperwork is completed, we will be contacted by UPMC (University of Pittsburgh Medical Center) to schedule the dates for the evaluation. This means until we set the dates, my schedule is on hold. Depending on what they decide to do, my entire lifestyle will change depending on what must be done to keep myself as healthy as possible in the meantime.
As we go through this emotional waiting period, I value when I am able to do schoolwork and escape. I value each moment with my family and friends. I value leaving the house to explore. I value the cuddles with my dog. I value everything I have in my life that allows me to remain sane and have reasons to continue to fight. Looking at a transplant is not an easy choice… it is the harder of the two choices we have. However, I want to make this choice because this gives me the possibility of living a longer and more healthy life. I am making the choice to fight through this next hurdle for my loved ones and friends. I am going to fight and pursue every avenue to become healthier because life is worth it.
During this time, I humbly ask that you please send prayers for peace, guidance, and protection. We hope and pray Pittsburgh is able to help us. Please send prayers to my Palliative care doctor who is working so hard to manage things for me to stay at home, as this doctor is the only reason I have been able to stay out of the hospital. Please send good vibes that insurance goes smoothly, and the expenses of traveling are manageable. Most of all, please pray for my family and friends as we all search for something to save my health. Thank you all for being so respectful and patient as I have taken time to process things before sharing them. You all help me find the peace within the fight. You all are my peace within the fight. We are looking at an incredibly tough road ahead, but we are fighting for any new possibilities, no matter how hard the path is.
Here is to fighting for better days,