- CASE FILE
I am awaiting a triple organ transplant that is slowed because they will only base by MELD number on my liver alone.
ABOUT THIS CASE FILE
I have been labelled with a disease called Myeloproliferative Neoplasm unknown that has caused buddchiari (or blood clots throughout my liver), clots in the major vessels of my small bowel and pancreas. Because of this I have been placed on the Transplant list for all three organs though they will only base my need or placement on the transplant list by the function ;or lack there of, of my liver. I am on many different medications including a blood thinner. I will be on more meds after the transplant including the blood thinner. I worry that this could all happen again once I get the new organs. It seems we are just trying to keep things at bay with meds and not really trying to figure out what I really have and find the way to really make this not able to happen again. I also have extreme anemia that causes me to have to get a shot every two weeks to get my hemoglobin numbers up so I don't have to get blood transfusions. I have to be on Ritalin so I don't sleep all day and Jakafi which is a chemo drug to try and help my joint pain, fatigue and night sweats. I am a patient within the Stanford Medical doctors and UCLA for the transplant portion. I used to play roller derby and was in great shape now I cant even work because I get to fatigued and just hurt all over to much. I usually have at least 2 or 3 appointments a month, have a blood test every two weeks and usually end up in the ER once or more a month. Since my liver doesn't function normally I sometimes end up in the hospital because of high ammonia levels that causes me to basically not to know my name or others and has made me tear out all my IV's and break free of restraints they had me in. I have a timespan of semi good days and some very bad times that will place me in the hospital for a short or long time. I need to find out what this really is and how to truly treat it. My medical records are extensive so not sure what to send but will send whatever you would like if you contact me back.