Liver Transplant denied twice, now what?

My daughter is 24 and diagnosed with ESLD, massive Splenomegaly, Liver Disease, Cirrhosis, Portal Hypertension, Esophageal Varices, Hepatitis C and Hepatic Encephalopathy.Her liver resembles a 65 yo alcoholic male.WBC is 1.4 - 2.0, w/low RBC; platelet count 45 - 52.Hospice provided care several years ago.Morphine and Fentanyl patches were prescribed for the pain.After several mos. her condition improved. Hospice saw addictive behaviors, so they took the oxygen machine and left.What they didn't take was her insatiable addiction to hardcore pain meds.Her pc doc saw the same and also pulled services.For over 2 y, she's not had a pc physician.Understandably so, no one will take her on.She is seen by a gastroenterologist, but only for endoscopies and bandings. He prescribes Lactulose and only Lactulose; no regular office visits or routine blood work.The addiction is at a minimum now, compared to what it was.It used to be anything she could get her hands on.Now, it's heroine, once a day.I really don't blame her; she's in pain and often in great discomfort.She has severe insomnia.No one will prescribe anything for pain or sleep.She isn't willing to go to another rehab.She's afraid that once she's clean, professionals will not take her pain or discomfort seriously.Pain clinics have a wait list of 9-12 mos. Her prognosis is grim; death, at any time, bleeding out. The hospital denied two liver transplants because of the addiction and Axis I dx. Her ammonia level is high 50's.A few days ago, her words seemed to get stuck in her mouth; she ran into a wall, forgot familiar names, stumbled, and her hands and arms shook.She ate, took vitamins and Lactulose.Even I have given up on taking her to a hospital for care. Weeks ago, we sat in a local ER for 4 hrs while staff socialized, drank coffee and laughed about a slow night outside our room!As we near the end, funeral plans in place, what can I possibly do at this point? How will I recognize that her condition worsening? Now what?

[Thomas D Schiano, MD]

i am very sorry to hear this.  addiction to pain medicine is itself not a contraindication for transplantation, but the heroin use precludes it.  She must see another pain management expert--if she is really gung-ho this condition is readily treatable.  One knows about the severity and/or progression of their liver disease by calculating the MELD score.  She should maybe consult another transplant center.  what is the cause of her liver disease and what is the cause of the pain?

[kc4824]

At first, Strong Memorial (Rochester, NY) specialists diagnosed the liver disease as idiopathic, perhaps there from infancy.  However, about a year ago, I perused through her medical file. Her gastro specialist stated it is clearly alcoholic liver disease. Strong said they didn't believe she could have ever consumed enough alcohol to cause that much damage at her age.  No liver biopsy was ever performed because of her platelet count and risk of bleeding. As far as pain, at times she will grimace and double over, immediately crying, because of a sharp, piercing pain in her liver. With her spleen so enlarged it protrudes, it's more of a chronic discomfort than pain. She has suffered numerous times with kidney stones in both kidneys and severe urinary tract infections for the past 18 mos.  Although the stones are clearly visible and documented through CT Scans, pain management is RARELY addressed. She is often sent home with nothing and I know, because most of the times, I've been with her when she was discharged. I have stayed with her after leaving the hospital, only to watch her roll, writhe and cry from the intense pain in her lower back. Unfortunately, to hospital staff, an addict is an addict is an addict.  Though various conditions, in her case, are confirmed via CT scans, she is still labeled as drug seeking. One ER doctor boldly stated to me and her case worker, in front of her, that she would never change, so why should he bother to waste valuable time and resources on her.  On the other hand, I am torn in two as I am not a medical professional on any level nor can I clearly recognize an Oscar winning performance driven by drug seeking behaviors. And, in regard to her MELD score, the highest score she's ever had was "11". The gastroentorologist said that with her particular condition, the urgent need for a liver transplant would not be reflected in a "40" or similar high score.  Instead, he would have to plead her case concerning the score, advocating it be raised based on factors not measured by the MELD equation. Thank you Dr. Schiano.