Post Multi-Visceral Transplant Recovery
Donation protected
I want to be as transparent as possible. I have gone through this journey, with support my family and loved ones, and have made it through every time. This time however, we find ourselves in a pinch. I am Santos, a 22 yrs old male currently waiting for a Multi-Visceral Transplant. MVT includes transplantation of 5 organs. The stomach, pancreas, large/small intestine, and liver. So what got me to this point? Trying to keep it as short as possible. I was diagnosed at the age of 7 with ulcerative colitis. I was unresponsive to medical intervention which lead to the surgical removal of 95% of my large intestine by the age of 9. Things continued to get worse when at the age of 15, year 2017, I got blood clots in a major blood vessel. Again, I was unresponsive to medical intervention at every turn which lead to 7 years of this clot growing to different blood vessels. I was left with an ultimatum of living as is, with symptoms that included massive episodes of hemorrhage. Or to get this transplant. I am choosing to get this transplant as it is the best option I have. They are asking me to stay within an hour of the hospital for the initial 6 months. I unfortunately don’t have the funds for this, and they expressed that survivability greatly increases living within those parameters. With a new life ahead of me, I can only ask for support. The funds would be used for finding a place to reside in post transplant. I am grateful for the opportunity the internet provides us, an opportunity in which we can reach for help in times of need. I am eternally grateful for those that take the time to read this, it feels good to even get my story out. For those that donate, thank you as well. Know that the help will aid in life changing events. I am currently a medical assistant, and was planning to go to school Aug. 26th for nursing. Unfortunately, due to these circumstances, I will have to postpone this. I have not let life take its way, and have always faced it head on. I have dreams, and with your help I can achieve them. If you want more information my Instagram is @javi_muniz_ , I will also follow up on this same post with a not so summarized, summarized version of my story.
I was diagnosed with Ulcerative Colitis at the age of 7. I was then promptly treated with all kinds of medications, all which had no effect. At the age of 9, I had to get 95% of my large intestine removed. I was left with an ostomy bag for a year before they closed everything off and left me with what is called a J-Pouch. Basically the reconnection of the small intestine to the anus in which it resembles a J, in simplified terms. This was by the age of 10. During the next four years, things would be complicated. I continued to be unresponsive to medications, and frequented the hospital for blood loss/abdominal pain. Upon reaching 15, I contracted a fever that would not go away, and aching pains around my back. Eventually, my PCP told me to go to the ER and get an ultrasound, in which they discovered I had an extensive clot in my portal vein. The portal vein is an essential part of the hepatic function as it sends blood to the liver from the intestines, and other organs, to be filtered and sent to the heart, again in simplified terms. They proceeded to do surgery, placing what’s known as a TIPS into the vein, meant for opening the vein up. During this process they put me on anticoagulants to break apart and prevent the clot from reappearing. Things then took a turn for the worst, because of my UC (ulcerative colitis), I started to lose a lot of blood. They stopped the anticoags and decided to wait for the bleeding to stop before resuming treatment. When the bleeding stopped and treatment resumed, it happened again. They tried three times before deciding to let the clot be. For the next 2 years, I continued to be on and off anticoags, stopping when I bled, and resuming when I stopped. This however, spelled disaster. The clot kept growing. Getting worse, eventually I developed esophageal varices and portal vein hypertension, which only helped in making the bleeds much more dangerous. I was then offered multivisceral transplant, which at the time I was against. So we went to Boston for a second opinion, where they placed what is called a mesogonadal shunt. An uncommon procedure in which aids in bypassing the clot and allowing for better blood circulation. This however collapsed after a year, when they took me off blood thinners to do a surgery. Trying to reopen it several times, only ended up in failure. This partook in 2020, since then I have been on blood thinners, which are proving to slow down the progression of the clot, but not halting. As the clot grew, my symptoms worsened. My esophageal varices burst, an artery has burst, and my regular UC bleeds have also been problematic. Massive episodes of hemorrhaging occur more and more often. Unable to go more than 6 months without an episode. Losing more than 50% of the blood in my body, passing out, and almost dying have become a new normal I can barely accept. I have trauma from these events, with my last episode being 7/18/24. On 7/18, I bled and continued to bleed despite initial intervention. Eventually when they controlled the bleeding, they decided that this is too risky. Living like this outweighed the risk of the MVT. Although I wonder if transplant is the correct choice, I am going along with it as it will give me a new life, free from current restrictions.
I was diagnosed with Ulcerative Colitis at the age of 7. I was then promptly treated with all kinds of medications, all which had no effect. At the age of 9, I had to get 95% of my large intestine removed. I was left with an ostomy bag for a year before they closed everything off and left me with what is called a J-Pouch. Basically the reconnection of the small intestine to the anus in which it resembles a J, in simplified terms. This was by the age of 10. During the next four years, things would be complicated. I continued to be unresponsive to medications, and frequented the hospital for blood loss/abdominal pain. Upon reaching 15, I contracted a fever that would not go away, and aching pains around my back. Eventually, my PCP told me to go to the ER and get an ultrasound, in which they discovered I had an extensive clot in my portal vein. The portal vein is an essential part of the hepatic function as it sends blood to the liver from the intestines, and other organs, to be filtered and sent to the heart, again in simplified terms. They proceeded to do surgery, placing what’s known as a TIPS into the vein, meant for opening the vein up. During this process they put me on anticoagulants to break apart and prevent the clot from reappearing. Things then took a turn for the worst, because of my UC (ulcerative colitis), I started to lose a lot of blood. They stopped the anticoags and decided to wait for the bleeding to stop before resuming treatment. When the bleeding stopped and treatment resumed, it happened again. They tried three times before deciding to let the clot be. For the next 2 years, I continued to be on and off anticoags, stopping when I bled, and resuming when I stopped. This however, spelled disaster. The clot kept growing. Getting worse, eventually I developed esophageal varices and portal vein hypertension, which only helped in making the bleeds much more dangerous. I was then offered multivisceral transplant, which at the time I was against. So we went to Boston for a second opinion, where they placed what is called a mesogonadal shunt. An uncommon procedure in which aids in bypassing the clot and allowing for better blood circulation. This however collapsed after a year, when they took me off blood thinners to do a surgery. Trying to reopen it several times, only ended up in failure. This partook in 2020, since then I have been on blood thinners, which are proving to slow down the progression of the clot, but not halting. As the clot grew, my symptoms worsened. My esophageal varices burst, an artery has burst, and my regular UC bleeds have also been problematic. Massive episodes of hemorrhaging occur more and more often. Unable to go more than 6 months without an episode. Losing more than 50% of the blood in my body, passing out, and almost dying have become a new normal I can barely accept. I have trauma from these events, with my last episode being 7/18/24. On 7/18, I bled and continued to bleed despite initial intervention. Eventually when they controlled the bleeding, they decided that this is too risky. Living like this outweighed the risk of the MVT. Although I wonder if transplant is the correct choice, I am going along with it as it will give me a new life, free from current restrictions.
Organizer
Santos Muniz
Organizer
Orlando, FL