After months of hospital stays and testing and doctor visits Brian now knows why he has not been feeling well. He is in need of a multi-vesicular transplant. This means 5 organs all at once: liver, pancreas, stomach, large and small intestine. We have been trying to keep up with updating everyone as we go, and the CaringBridge seems to be a good way for all to stay current. Thank you all for all the prayers and kindness. We feel comfort from them everyday.
From the start, until now: Everyone’s lives have had soaring highs and humbling lows. Though one can never predict what will come next, a simple focus on working hard, loving with your whole heart and being kind to others will give us all the stamina to get through any hardship. Brian Little has exemplified those traits throughout his life. Brian’s three children (Devann 25, Dustin 23, Brianna 15), Andrea’s three children (Broedy 21, Gabe 18, Zayn 14) and one grandchild (Trenton 5) have kept these parents very busy in their 6 years together. Coaching, chasing kids to sporting events, school activities, vacations, and spending time together has always been at the top of their life list. Realizing that their children were nearly grown, they started to discuss the future for each other. His dislike of the cold weather in Illinois, mixed with Andrea’s love of the beach and peaceful ocean, made it an easy decision to move to the sunny state of Florida. Unbeknownst to either of them, the life and trials ahead of them drew them there for a much larger reason.
In May of 2018, while Brian was living in Florida and the rest of the family remained in Illinois to finish out the school year, he began to not feel well. A trip to the ER resulted in his admission into the hospital to have his gallbladder removed. Stomach problems and heartburn have always plagued Brian, so all believed this to be a routine surgery. After a successful operation he was feeling better, but other issues began to arise with his health. Post-surgery his diet was changed, with the hope that would improve things, but this was not the case. At this point, Brian and Andrea insisted on a scope to see what might be causing the daily discomfort. The scope didn’t show at all what the family expected, a bleeding ulcer, but rather, class 3-4 esophageal varices. Esophageal varices are similar to varicose veins found in legs, in that blood clots and forms the varices. They were told not only had the varices likely been there for quite some time, but that class 4 was the highest stage of esophageal varices. This meant, Brian was in high risk of them rupturing and causing internal bleeding. Anxiousness began to set in for the family. He was not allowed to do much physical activity to prevent ruptures, life changed. The varices were to be banded, which would help prevent them from rupturing. This had to be done every 6-8 weeks.
In July, while waiting for the banding to happen, Brian found himself in the hospital again with severe pain in his back and abdomen and jaundice setting in. They performed the banding on the varices and proceeded to examine the reason for the extreme elevation of his liver enzymes. The jaundice indicating that the liver was not functioning properly, was treated to reduce liver numbers and eradicate the pain. After many scans of his liver, a great deal of scarring was evident, but no diagnosis was given. Lowered liver numbers allowed him to go home, life adjustments were made for what was thought to be side effects of the gallbladder removal; and during the next couple months he was banded again. The pattern for looking ahead to another banding while monitoring liver enzymes things seemed a reasonable plan. However, Brian’s pain returned in September, sending him back to the hospital to find a blood clot in the vein feeding into his liver. The blood clot was the cause of the pain, and the reason esophageal varices formed. A hematologist came into the picture on a weekly basis to continuously monitor the blood count and clot. This resulted in…..more testing.
Turning the next corner with the hematologist on board, a bone marrow biopsy discovered the presence of a blood disorder, Jak2 (causing blood clots, mutation and polycythemia vera - bone marrow that creates too many platelets), a blood cancer. A lifetime medicine has been added to his daily routine and will be a part of the continued monitoring of his health. However, it did not give answer to the Little’s bigger question- how would the liver be fixed?
The next expert was a GI doctor. The results she found in testing, gave an immediate recommendation to the Mayo Clinic in Jacksonville for discussion of a liver transplant. Here Brian would see a liver transplant team to evaluate what was going on and begin a plan. Mayo Clinic was to be the gateway to understanding this issue and he was to begin 3 weeks of testing in October. The diagnosis of Portal Vein Thrombosis and SMV Thrombosis was given at Mayo. Portal Vein Thrombosis is the blockage of the vein into the liver, while SMV is a blockage of veins feeding the bowel system. Three days into the three-week treatment, Brian was told testing was being discontinued and was sent to Jackson Memorial Hospital, Miami Transplant Institute. Though a dizzying experience, there was hope that answers were on the way.
Miami Transplant Institute compiled all previous tests from all previous doctors, specialist and hospitals as well as running a few new tests. This was a time of mind boggling reflection on the possibilities, the ‘Google-d’ answers, the shared knowledge from doctors and specialists, but mostly the unknowns of what would come next for Brian and his family. No one expected the result: a multi-vesicular transplant. This surgery is the removal and transplantation of five major organs at once: stomach, liver, pancreas, small intestine and large intestine. The surgeon who will perform this transplant believes that the clots formed after Brian’s spleen was removed at the age of 18 months old. He had been in the hospital as a child from 8 months old to 18 months old with a rare blood disease, that at the time, doctors did not have a name for. His infant spleen had collected his red blood cells and would not release them. Once the spleen was removed Brian became healthy, no further problems resulting, until now.
The final answer: Brian needs this transplant because over the years blood clots formed in the veins between the organs have damaged them beyond repair. This is, in turn, destroying his organs one by one. With he and his family’s heads and hearts spinning, Brian has one final procedure to go through before the transplant can be possible. It is their fervent hope that Brian has a long and healthy life ahead of him beyond this surgery. Brian’s focus will be on healing and following doctor’s orders with full appreciation of his life and the love of those in it. He and his family are incredibly thankful to all the friends, family, and grace-giving strangers for all the prayers and support they have received so far in this journey. The Little’s have a long road ahead of them, but feel grateful that they are where they are suppose to be, in Florida enjoying the blessings of each other, warm weather, the beach and the amazing professionalism and knowledge of doctors that have continued to guide them with each step towards Brian’s recovery.