This patient story is posted by admin as the writer is afraid to be identified.
When my husband was first diagnosed with ESLD, his GI doctor told him that his liver would repair itself, even though an ultrasound had recently shown scarring of the liver. He prescribed him Xifaxan but his insurance wouldn't cover it because they needed preauthorization. The doctor's office would not follow through with my request to call them. His next visit, the doctor told us that he could do no more for my husband and dismissed him as a patient. He told us that his only option was to go to our local transplant hospital's ER department so that he could start off there to try to get seen by the Hepatologists at the transplant hospital. My husband got in to see them and they told him not to worry about the Xifaxan and, for the next year, he underwent rigorous testing, invasive procedures, counseling, weight loss, teeth extractions, etc...
He got cleared by every doctor that he needed to be cleared by to get on the list. However, since my husband's liver disease was caused by previous alcoholism, he was told that he must complete 3 AA meetings a week. He tried extremely hard to go faithfully. After all he had already done to be considered, why would he want to mess up his chances because of not attending meetings? But, his physical and mental deterioration, made it impossible and he was only able to attend 1 meeting a week. I spoke to the social worker with the transplant team about this concern numerous times and was told that there were no exceptions for no reasons. This ultimately led to my husband's dismissal from being placed on the list. Later, I found out that there were online meetings but was never told of these by the social worker. But the hospital not only decided not to consider him for transplant, they also decided to drop my husband as a patient as well.
After my husband regrouped from that devastating blow, he found a new GI doctor who told him that his liver was doing so well now, that he wouldn't even need to be considered for a transplant. And he was therefore approved to have his 4 hernias, that had been caused by ascites, surgically repaired. Though he was warned by the surgeon that his liver may tank given his history with ESLD, my husband proceeded with the surgery to try to improve his quality of life. He had been miserable for years because he also has chronic neck and back disorders and no doctor would prescribe any high doses of pain medication to try to make him comfortable. So he was trying to rid his body of one of the major causes of pain and discomfort by having the hernias repaired. He couldn't get any doctor to sign off on a neck or a back surgery but he did get one to sign off on doing the 4 hernia repairs.
His liver did tank after surgery and he developed Spontaneous Bacterial Peritonitis possibly because the surgeon didn't think to send my husband home with prophylactic antibiotics, even though he knew my husband's health concerns. However, he quickly bounced back again. He was doing good up until this past Christmastime when he developed his second bout of SBP and he had also gone into septic shock due to this. He was in ICU for 4 days and spent another 3 in the hospital. He was released with his WBC being higher than it was, at any point previously. He develop ascites again. He hadn't had a problem with ascites since he was first diagnosed. Back then, he was drained weekly for 8 weeks before the doctors got it under control with diet and diuretics. After the redevelopment of the ascites, he had to visit the ER again to be drained.
The next time we went back with ascites, a doctor said that he was going to try a home drainage system for my husband. We expressed that we did not want that device implanted because the doctors at the transplant hospital told him that would be a very high risk for infection and it would never be advisable. The doctor noted our concerns and told us that he would just drain him and that we would come back to the idea of the home drainage system at a later date. However, when my husband came back from the procedure, he had the home drainage system in place.
We left the hospital and a nurse came out to the House to drain him and teach me how to do it. But after day two, the tube had become clogged and was unable to drain and my husband was in extreme discomfort because of this device. When we went back to the hospital the following day, we were told that it was infected and he had cellulitis on the inside of his stomach wall and on the outside of his stomach where this device was placed. The Doctor who implanted the device said that he was given an earful from a senior doctor for ever implanting the device in the first place. He took the device out and sent us home. We ended up back in the ER a few days after and were told that he had a blood infection, a gram positive bacilli. At this time, the doctor told me that my husband's health appeared to have declined to the point that he didn't think he would live much longer and i should consider Hospice to help him enjoy his final weeks or months.
After he got a week's worth of IV antibiotics to give him the best chance possible, we left the hospital under the care of Home Hospice. His troubles only got worse after that. But that's a story for another time. My husband is still fighting for his life. But NOT ONCE has any doctor ever done a liver biopsy on my husband to evaluate his liver disease. I looked back at some of my husband's medical records from 10 years ago and it shows that even then, his liver enzymes were through the roof. But we were never talked to in any detail about this or what it meant. I believe he has always been given subpar quality of care from doctors. I wonder if they just wanted to write him off and hope that he would just pass away so they wouldn't have to deal with him.