When I think of why I share this journey it is to raise more awareness for medically complex patients and their families. That means sharing the good, and the bad. The hardest parts are when the road becomes unknown. Territory that has been uncharted. A future cased over with doubt and concern. While we try to avoid this, the unknown is the most common aspect of having rare diseases. Its part of the reasons for the need for cures. Right now we are submerged in the unknown yet again
My decline this summer made our force to be getting to a transplant center. The reasons for doing so were the fact there was nothing else that could be done; to improve my quality of life, and to gain independence back. After research, we chose Pittsburgh. Upon finishing my initial evaluation in December, I recently returned to be inpatient to finish the process. As we packed our bags for what was supposed to be a lengthy stay, we had hope these bags would hold the clothing that would be worn for big moments. Moments like when being told I would be put on the list for new organs. Moments like being told they can improve my quality of life. Moments where they acknowledge how complex I am, but that the prominent issue is the gut. We hoped they would desire to help. The goal was that I would get listed, be transplanted, and begin the recovery process to rehabilitate my body with new non-diseased organs. We were hoping to grasp onto that second chance of life.
Upon arriving, we realized Pittsburgh wouldn’t be the center that would accept my case. After confirming my diseases are systemic, meaning they affect everything not just the intestines, they decided to not list me. They came to their decision months ago. Unfortunately, we were never told of this until last week, after we traveled for further evaluation. This was the first of many errors in communication. Up until that point, my medical team was under the impression the center would be accepting me as a candidate for transplantation. It was an unexpected turn of events that left everyone confused, and defeated. We would have preferred being informed of these choices sooner. That could have helped us avoid months with a center that didn’t have the drive to better my chances of a healthy life. The past six months have been consumed with every ounce of energy going towards trying to stabilize my health. The stability was in order to guarantee optimal outcomes for transplant. We began treatments for my adrenal glands and thyroid not working. I invested myself fully into improving my physical strength to begin doing stairs and not using my walker anymore. I wanted to prove I could handle the physical part of the recovery process for transplant.There have been multiple surgeries that have needed to be performed on my GJ tube and ileostomy, but I have worked through discomfort instead as we didn’t want surgeries to cloud the success rates of a transplant.
Then we were told this center refused, and refuses, to look at my medical records. Medical records that hold very important tests and information within them. A series of events took place in Pittsburgh that set me back more in my care plan. After my Gastronomy tube had been clamped, my distention in my gut became extreme. This distention set me back massively in pain and nausea. It defeated my goal of avoiding pain medication doses. It dislodged the tube I just had surgically replaced. As a result of it being used incorrectly, I will be having a procedure tomorrow in Milwaukee to replace it. It makes me grateful that in Milwaukee I have a team of doctors that practice compassionate care, and want me to thrive. I am nervous to have this painful area manipulated, but grateful to have the mistakes they made be reversed.
I believe in nothing but wishing the best for others. Positive vibes only! I am a firm believer what you put out is what comes back. Therefore, my family and I have been trying to combat the anguish and heartbreak from this experience with good thoughts. I am grateful we were able to consult with Rheumatology. They confirmed my diagnosis of having an Undifferentiated Connective Tissue Disease (UCTD). I have had autoimmune conditions since the age of 12. Inflammatory rashes, sun intolerance, hair thinning, mouth ulcers, nail sores, Raynaud’s, mental cognitive fog, joint pain, joint swelling, intense fatigue… due to my young age and the overlap of multiple conditions, Lupus and other systemic conditions, the category I fit into is still UCTD. The Rheumatology team in Pittsburgh ordered a lip biopsy to narrow down my diagnosis. I had this surgery done bedside. A negative rules out one disease and I still am labeled with UCTD, or a positive gives a more specific label. These results don’t change my outcome or prognosis. They restarted IVig infusions. This stands for Intravenous Immunoglobulin Therapy. It is made from plasma donations of selfless donors. The antibodies are filtered out from the blood product and infused into the recipient. This eliminates my immune system. I will be getting these infusions every month for at least 6 months. For 14 days each month I will be very immuno-compromised and need to wear a mask whenever around people or in public. I am thankful to have discovered Vogmask through my fellow chronic illness fighters, and ordered one off of Amazon! The filter on the mask allows me to have less foggy glasses when wearing the mask.
In regards to my most important job, my health, it leads to the “now”. “Now” is unknown. Now every plan we had is changed and left open ended. While this setback has left us disheartened, we will rise once again. We will continue the IVig infusions. It’s hard to have medical cares be a full time job, but I want to make sure if I do eventually get a transplant I am as healthy as possible. If I don’t prove to be well enough to survive transplant at other centers, then it is important to help support my body as much as possible while it battles progressed intestinal failure. Living a long life is the goal! Our plan moving forward is unknown. We will begin the process of looking at other centers. The state of health I am in right now is one that can’t be continued. Being in pain, nausea, fluid retention, glands no longer functioning, and more. It is these issues and continued decline that make taking action imperative. As of now the only option we have is looking at new transplant centers, or finding a miraculous gut rehab center. This will be lengthy and ongoing. I hope a new avenue will come sooner rather than later. I fear having to begin journeys at new centers, but I also know I am determined to win this battle.
My family and I have been living in a state of surreal existence. The outcome of this center was something no one could have foreseen. At first it felt as if our dreams and goals had been crushed. The one thing we do know is that we will never give up. We refuse to let one center, one surgeon who did not even get to know my will to fight, define my future. I am trying to find a positive outcome of this: that we now to look elsewhere. To find a center with a team that enjoys my zest for thriving and wants me to have a fighting chance of living a beautiful life. We will continue to defy statistics. We will continue to fight for better health and an improved quality of life. We will fight to ensure a future full of thriving and regaining independence. We will fight for living. Life is for living. The good and the bad. Right now things are completely in “limbo”. Its stressful and anxiety-inducing to be living moment by moment, but I remind myself to be thankful to be alive to have these moments.
Thank you for your support, your patience, your compassion. Everything this community from The Peace Within the Fight has formed beautiful connections and bonds. . I now dream and pray… that we will be able to make a plan, to eventually begin looking at other centers, and that the issues that keep happening are able to be managed outpatient. When I feel upset about what has happened, Iremind myself that hopefully our suffering can prevent a family in the future from going through the same. I feel overwhelmed and lost… but you all help me find the peace and joy. For that, I have eternal gratitude.
All my love, and we will rise again,