My Journey to a Five Organ Transplant

Hi, my name is Siobhan Rhodes. My medical journey began over 7 years ago which has led me to be diagnosed with GERD, Gastroparesis, Colonic Inertia, and Pseudo intestinal obstruction ultimately causing me to go into multiple organ failure. At the age of 18, I got very sick with an infection in my trachea which caused me to go into septic shock. Prior to this, I was a relatively healthy individual. Although no one was able to figure out exactly what caused this infection, one thing they did know is that my acid reflux caused damage to my esophagus. Under the care of a local GI & ENT I trialed multiple medications as well as changed my diet but nothing was responsive in healing the damage done. Multiple upper endoscopies later, my doctors believed it was in my best interest to consider surgery. Ultimately I agreed that the Nissen Fundoplication with hiatal hernia repair would be beneficial as it would repair my valve using the upper portion of my stomach to keep everything from coming back up. This surgery gave me hope that this was going to be my solution and I was ultimately going to be medication free. Unfortunately, that was not the case. After this procedure, my recovery was far from easy. I was constantly battling nausea & struggled to digest solid foods causing me to lose quite a bit of weight. My GI & ENT didn’t quite understand what was going on therefore I had a follow-up upper endoscopy to get a better look at what was going on. Findings saw that I had undigested food in my stomach and that my stomach's motility was next to nothing. After this diagnosis, my GI sent me for a 4-hour nuclear-med study to determine how delayed my stomach was, and the results showed that after 4 hours after eating radioactive oatmeal, it was all still in my stomach. This confirmed the diagnosis of Gastroparesis which led me to try multiple medications for gastric stimulation which unfortunately did not give me any relief. We got to the point where my GI could no longer help my case and referred me to a specialist out of Tampa General to manage my care closer. Upon my case being transferred to a new GI, he discussed two procedures the Pyloromyotomy which essentially cut my pylorus muscles in my stomach to allow for quicker digestion out of my stomach as well as the gastric pacemaker which my GI said I didn’t qualify for because of my lack of motility. Knowing I had nothing to lose, I agreed to the Pyloromyotomy which also unfortunately did not help. At this point, I was struggling to maintain my weight as I could not keep anything down & survived off protein shakes. This led me to my first ever feeding tube, a GJ. The feeding tube offered relief as I had 2 different tubes one to drain my stomach and the other to feed but ultimately struggled to maintain a high rate at which my feeds ran due to the pain I was now dealing with in my intestines. My GI continued different studies to try to find the root cause of my problems which one test led me to test positive for small intestinal bacterial overgrowth which was treated with rounds of antibiotics but ultimately continued to come back. At this time point, I was referred out to a colorectal doctor who had me go through the Sitz Marker Study. This test was going to answer if my intestines were also struggling with motility alongside my stomach. This test required you to swallow a capsule pill & after 6 days you were to come back in for a series of X-rays to see where the 24 nuclear med rings were sitting in your GI tract. The goal was that none were going to be seen, but all 24 were present in the beginning portion of my intestines or my stomach. My diagnoses continued to follow the snowball effect which ultimately found that my entire gi tract was not functioning. With the combination of continuous infections in my small bowel, not being able to process anything by mouth, and struggling to maintain a high enough rate on my tube feeds my team of doctors agreed a total colectomy was necessary. This was October of 2020, right in the middle of COVID where I spent almost two weeks inpatient due to post-operative issues after having my entire large intestine removed at the age of 23. About 6 months post colectomy, I could barely tolerate any tube feeds as it was so painful & was once again struggling with nutrition. This led me to have a central line placed in my chest in April 2021 where I would receive TPN which bypassed my entire GI tract and allowed me to receive the nutrition IV via my bloodstream. My GI was running out of solutions or ways to help me. I kept being told TPN was my answer & the only way for survival and that the diseases I was diagnosed with had no cure and were progressive. This is when my sister found Miami Transplant Institute. Immediately after my case was sent by my GI to this facility I was called instantly for a consultation to discuss my options with the possibility of a transplant. After an initial zoom call discussing my case with the entire transplant team, I was scheduled for my first in-person transplant workup. Essentially this was giving my team a baseline as to where I was at currently and what they thought the best course of action would be to make me strong enough for transplant. This was when I was diagnosed with pseudo intestinal obstruction secondary to intestinal failure. Ultimately, I was in need of a four organ transplant. After completing an extensive workup, I was officially listed on November 2nd, 2021 for a 4 organ transplant including the stomach, small intestine, large intestine, and pancreas. Since October of 2021, my health has considerably decreased. I have endured 4 rounds of sepsis, my feeding tube dislodging for the 3rd time, multiple central lines dislodging, a blood clot in my arm, and most recently COVID. I began seeing a pain management doctor to help with the organ failure and went through a nerve block to help with some of the pain I am experiencing as well as abdominal distention. Besides being on 16 hours of TPN daily, I also have to give myself fluid bags to help with dehydration and give myself IV medications including nausea meds so I am not throwing up multiple times a day. Since starting my journey to transplant, I am so incredibly blessed to be under the care of such an amazing team at MTI. Since my first visit to where I am now, my team has done everything they can to help me get to that ultimate goal, a transplant. Since being listed, I have received 4 calls for an organ transplant, 2 of which the crossmatch was not great & the other 2 where I was in pre-op pending transplant but lost the organs due to viability and me personally not being well enough for transplant. But ultimately, I have been moved to status one which puts me at the top of the list! This go fund me is to help with the costs that insurance will not cover getting me through the transplant itself and the long recovery requiring to stay local to Jackson Memorial several months out of a 4 organ transplant with rents that are well over $3000 a month. All donations are greatly appreciated, and every share is one step closer to my dream of being able to get the quality of life I have been wanting for years back. Thank you from the bottom of my heart to everyone who has followed my journey so far.