It's hard to tell you what's happening or what to do without more detailed info, although I completely understand that you do not have this information, and this is all exacerbated by the current isolation requirements. If I were you I would be focused on finding someone to talk to who can explain things better to you or her medical power of attorney (which, by the way she should definitely have at this point). Does she have a follow-up appointment with a liver doctor within the next week?What medical problems did your sister have prior to March 5th when she was found down in the bathroom? Do you understand what is the primary source of her liver failure? Most common things are alcohol abuse, hepatitis C, or toxicity from a Tylenol overdose... others have what's called "cryptogenic" liver disease which means "it's a mystery" but these cases usually don't present as rapidly and dramatically. Sometimes even young healthy patients just have really bad luck and get a bad viral hepatitis that leads to fulminant hepatic failure in a very short time span.Reasons for being denied a spot on the transplant list generally fall into one of three categories: 1 - not sick enough yet, 2 - too sick or has other serious other problems that mean even with a transplanted liver she would not survive long enough to benefit from the very scarce resource of a liver donation, and 3 - not eligible due to history of current or recent alcohol or drug abuse.From what you describe it sounds like she was reasonably healthy and has had a sudden dramatic decline in her health which included an ICU stay with multi-organ failure (liver, kidneys). Then at some point she had somewhat "stabilized" enough, although remained in overall poor health due to her illness. At this point she was discharged home with home health, outpatient dialysis, and PT for rehab, but given the current worldwide situation those services are not being very reliable. Pain, weakness, and some shortness of breath are honestly part of her disease and may not (by themselves) warrant re-admission to a hospital... depends on the severity and whether there is any intervention that could be done in a hospital setting to improve her. Perhaps she should have been discharged to a skilled nursing facility, but these have specific requirements which she may not have met. I can speculate all day but without detailed information it is hard to give good answers.I'm sorry for what you and your family are going through - both the fear of your sister's declining health as well as the uncertainty and confusion you are dealing with. I know it must be very frustrating. Like I said above, the most important thing is getting more info. And if she truly is getting sicker and looking worse at home them take her back to the hospital ER. They may or may not readmit her, but at least she would be evaluated and you'd have a chance to talk with someone about her situation.
Ineligible? Its probably the alcohol. Transplant has very strict regulations. I cant believe any transplant team would say shes a good candidate if she lost her liver due to alcohol abuse. Just like with cigarette smokers. You have to quit and show at least 6 months to a year smoke free before you can even get on the list. Its a long process.I had to wait five years after my stomach cancer to get my transplant. So I did my best to follow my diet and restrictions set forth by my nephrologist and dialysis center.Im only speculating, about your situation. Im sorry if any of this sounds harsh.It took 3 years of waiting on the list and finally as my health took a turn for the worse, my ex donated his kidney to me 15 months ago.If she will not comply with the program, theres no reason to transplant a healthy organ in a person who wont stop those destructive behaviors. The restrictions/rules are there for a reason. I had So many moments of pure anger, crying, frustration and hopelessness. But thats normal considering the situation.I AGREE, she needs to be hospitalized. Her dialysis center should be advocating for her. Find out who is the social worker for her clinic and contact them ASAP.Also, did you know that for a liver - you can donate just a portion - it doesnt need to be the entire organ for a successful transplant. You (family) could still get tested while you work with the transplant team to make her eligible.My mom has cirrhosis of the liver & she too was ineligible because she was a heavy smoker and soda drinker. She wouldnt quit. Shes outlived all the doctors predictions. But shes suffered tremendously. I finally got her and my dad to quit about five years ago. Shes still too afraid to have transplant, shes set in her ways. So everyday is sheer hell at this point. Im terrified for her with COVID-19. One person has already died at her assisted facility living.Heres my take on part of the reason she was worse after she came home is most likely the dialysis. Its a new thing for her body. It has to adjust to it slowly over the next few months. Depends on how bad she is. It wrecks havoc on your body. You can have extreme lethargy, dizziness, headaches, nausea and cramping.She has End Stage Liver Disease. She is living with terminal illness. The only real thing besides humor & my kids that helped me cope was educating myself. About my disease, dialysis etc.I am so sorry this is happening. Wishing you both the best in the future to come.