Damon and I met in 1989 and fell in love instantly. We were both young teenagers so we went our separate ways but got together, exclusively in 1996. He was my soulmate. We did everything together. We had two kids together. He was diagnosed with end stage liver disease in 2015. When he was first diagnosed, I spent countless hours researching everything that I could find out that would help me take care of him better. I found some wonderful liver disease support groups during this time that would turn out to be so very beneficial.

The cause of Damon’s liver disease was alcoholic cirrhosis. Damon had quit drinking about a week before his diagnosis. He had tried to quit in the months prior to by going to different inpatient rehab facilities but none of them were the right fit for him. He finally found one that worked and after he completed a 40 day inpatient program, he came home. He was excited about slowing the progression of the disease by continuing to remain sober.

He saw his first gastroenterologist about his liver disease in October 2015. This doctor told him that since he had stopped drinking then the liver would most likely repair itself. I inquired about the ultrasound done in August and the fact that it showed scarring of the liver. The doctor assured me that the liver is the only organ in the body that has the unique ability to repair itself and can still function when the majority of it is damaged. He made a six month follow up appointment. When Damon went back to see him, he had started to develop ascites and cellulitis. At this time, his current gastroenterologist told Damon that his liver disease was in the end stage, which is what I questioned during our first office visit, but that there was nothing else that this doctor could do for him. He told him to go immediately to our state’s only transplant hospital and go to the ER and request to see the transplant doctor. We did this and they admitted Damon for ascites and cellulitis and said they would set him up to be evaluated for transplant in the months to come.

He spent the next phase, going through all the testing. He passed all the tests, had all the doctors sign off, lost weight, and even had teeth extracted. However, he could not physically handle going to three AA meetings a week. He went to one a week. He was physically deteriorating and had frequent bouts with hepatic encephalopathy. At this stage in his disease, he was unable to get the doctor to prescribe him medication for adequate pain relief and his insurance wouldn’t cover the prescription for Xifaxan. I begged the social worker on the transplant team to please work with him, on more than one occasion. His last drink was August 3rd, 2015 and he started the pre-transplant evaluation process in September of 2016. I asked the social worker on the transplant team, if the hospital would do blood or urine tests but she wouldn’t budge. So, after all that time, money, and energy had been placed into getting Damon evaluated for the list, he received a letter in the mail stating that he was no longer being considered to be placed on the transplant list at their hospital but was free to try another transplant hospital. He was upset but just saw it as another setback.