“I’m sorry we can’t help your daughter,” the doctor said from an emergency room. “We are transporting her to a specialist ICU for liver and kidney failure.”
In the interim, her mother had drunk herself to death. During her depression and my absence, my daughter was drinking too. I learned later my daughter had been drinking for a long time. How long. How much I didn’t know.
My daughter was a twenty-something addict. She was the youngest adult patient in the hospital for alcohol-based liver disease. In the hospital, the staff shaved her head because her hair was matted from not bathing. Her roommate checked on her after days of not seeing her awake. She was within minutes of death when the paramedics arrived.
Over the next (4) years I split my care provider time with her roommate. Six months with my daughter then six months with my wife. My wife lived in a foreign country.
Her liver team informed me she would need a liver transplant or die. My daughter was now homeless, disabled, needed a liver donor, and a care provider.
Few get on a transplant list nor do they survive the wait.
After she was on a liver transplant list for (2) years and then kicked off of it. I stayed the final 1 ½ year of her fate.
MY ARRIVAL
I wondered how or who spent her mother’s inheritance money? It was enough to buy a house let alone not paying rent for two years. One thing was for sure. She took the money and quit her job then moved her life inside of a booze bottle.
She went downhill.
Followed by nights of screaming in pain. Her behavior was toxic. She was hostile, belligerent, hysterical, confused, and neurotic. Every day was an emotional roller coaster ride.
My daughter criticized me for being a bad care helper. A bad father. It was all my fault. I needed therapy. It was disrespectful but disrespectful of what she never explained. Then she threw a knife, dishes, or anything in reach at my head. People said I was a hero dad. I didn’t care. What mattered was I tried to save her life the best I knew how.
What I didn’t understand was one of the side effects of liver disease. It’s called Hepatic Encepatholgy. Cognitive distortion. Toxins on the brain. Brain fog. She wasn’t making sense and there was a reason.
Liver transplant patients are a high acuity patient population. Meaning they are incredibly sick patients. The common symptoms of a patient with end-stage liver disease are yellow skin. Swollen legs. Stomach distension to the point of shortness of breath at rest. And malnourishment with muscle wasting to the point of becoming bed-bound. The brain swells due to increased ammonia levels in the body. This condition causes patients to become confused and sometimes agitated, called hepatic encephalopathy. Lactulose is a medication used to resolve hepatic encephalopathy. By excreting ammonia through its laxative effects. Patients often have skin breakdowns from constant incontinence care. And are often embarrassed because they cannot get to the restroom in time. Many patients with liver disease are extremely fatigued. Depressed often wanting to give up hope while waiting to get a liver transplant. — Registered liver transplant nurse
My daughter suffered from all these symptoms.
I helped with the (5) ADLs +
Bathing: personal hygiene and grooming.
Dressing: dressing and undressing.
Transferring: movement and mobility.
Toileting: continence-related tasks including control and hygiene.
Eating: preparing food and feeding.
Pet maintenance — dog and cat
I also managed all public means programs. EBT food stamps. Social Security Disability. Medical appointments. Regular blood transfusions. Weekly Paracentesis procedures (the removal of water from her body caused by edema). 24/7 care. Stays in the hospital.
My time to myself was when she slept.
Her 100lb Anatolian Shepard dog had a broken leg. I had to carry it up and down the stairs.
THE HORROR OF IT ALL
On May 2, 2019, she received a letter of acceptance from the university liver transplant center. I cannot print their name. I will call the care provider the “university.”
We got optimistic.
With some luck and help from her Guardian Angel, she would survive the wait. The disheartening news was the statistics given to us by the university. Because of her blood type, age, gender, and size, she’d be a difficult match.
Before she could be eligible for a new organ she had to complete a six-month chemical dependency therapy program. Add another six months to the clock that’s already ticking down not in her favor.
There was no follow-up from her transplant coordinator. Not only was that alarming. But there was no other information. There was a brief overview meeting with other patients. No step-by-step guide on what the program expected from the patient and vice versa. No legal contract. The communication between my daughter and the transplant coordinator was negligible. The transparency of the university was as clear as a frosted window. It looked like a self-guided tour through hell.
Every day they failed to move my daughter along could cost her life.
I waited for three months and called. “What’s my daughter supposed to do?” He did not apologize. “Oh, I forgot,” he answered.
This was the beginning of the worst medical care experience I have known. Missed phone calls. Missed appointments. Accusations of care follow-up were among many problems. They not only blamed it on my daughter. But despite the nature of her medical condition held it against her. It was like a grade school tardy report. Too many red marks and you die.
No one reached out to her or at least sent a warning letter. I asked for proof of their bad patient allegations. Their answer was they didn’t have to show me. Beyond following her medical tests on an online portal. The dialogue going on behind the scenes closed.
Often I saw calls from her care team that did not leave a callback number or what they wanted. My daughter was often too sick to function couldn’t take the call.
Why did no one reach out to me?
I tried to complain through university channels. I got the runaround. I reached out to UNOS (the united network for organ sharing) for answers. UNOS explained that these organ transplant centers can be like an Indian Reservation. Outside rules and laws don’t apply? They’re a sovereign entity? Autonomous to the US Constitution?
I couldn’t believe what I was hearing. I needed to appeal to the Supreme Court to find out why they thought my daughter was a bad patient?
The university has more lawyers than Trump.
Because she was on Medicaid legal proceedings would have to go through the Minnesota Department of Human Resources. That would take time. In the end, it still would not save my daughter’s life. I felt that there was more going on than I knew. I suspected the university would not share its documents because it exposed liability.
Later in this story, the State of Minnesota changed its HIPPA Law. Patients now have access to such information.
I sat in on a video conference with her transplant surgeon who I nicknamed Dr. High Heels. As a side business, she sold shoes boxed in Italy that cost hundreds of dollars.
Shoes made for one dollar in an Indonesian sweatshop.
The doctor lacked empathy. Cold, calloused. No exceptions. Another number on a waiting list. She gave my daughter a chance to do better at care follow-up over the next three months. Do better?
The reason I learned why they treated her with prejudice was because of her addiction. They didn’t trust her — the relapse factor. Members of my own family said she made her own bed and had to lie in it.
Alcoholism carried a heavy stigma but it is a disease like any other.
My daughter did everything asked. I know because I was there to supervise. During that time the university racked up every mega-expensive test on the list.
Before my daughter received the rejection letter. Dr. High Heels appeared in her hospital room with three other doctors. In front of everyone present, nurses, other patients, she berated her. Unprofessional and private remarks about how unfit she was to be in her program. After the doctor left, a 20-year veteran RN told my daughter as long as she’s been in practice that was a first. The nurse reassured my daughter. She was hardly the worst patient on the liver transplant list.
A FINE LINE BETWEEN HOPE AND DESPAIR
When I thought my daughter wasn’t going to make it I wrote and recorded this song “God Can Wait One More Day.”
On September 14, 2020. The University mailed her a letter of liver transplant termination.
Please stop a moment and reflect. How you would feel? Reading a letter that said you aren’t worth saving?
The reason given is “inadequate participation in your care.” I was livid. These people were in denial. You couldn’t hold them accountable for anything. They were hopeless.
I got out her Life Insurance policy.
My daughter wanted to commit suicide.
I called the MAYO and prayed. I asked her guardian angel for help. I got her a new assessment.
The assessment took three full-time days. As I pushed her whimpering body in a wheelchair from office to office. I thought the time had run out on her.
During one appointment with her new liver transplant surgeon. He said in relief, “You’re nothing like the doctor at the university said.” In other words, Dr. High Heels took it upon herself to call the MAYO and bad rap her. I assumed the reason was to cover her tracks so she wouldn’t look bad? Excuse me. My daughter good or bad is dying.
Once again. She had to pass another three-month chemical dependency program. She had been sober for years and as such did not qualify for the recommended programs. My daughter was too ill to take part in them anyway.
One of the chemical therapy counselors felt sorry for her and showed leniency. I felt the process in her case was unfair but the MAYO had their rules too. Her sobriety had to be proven. Even if it killed her.
Finally, in November 2020, my daughter received a new letter. She was accepted by the MAYO for their liver transplant list!
LIFE & DEATH ROLLER COASTER
My daughter and I had reached our breaking point. She lied in bed with a sheet over her head and didn’t eat. I suffered from a lack of sleep. Despair, worries, financial problems, and existential distress. I had not seen my wife in a year and wondered if ever.
The MAYO called me in March 2021 and said they wanted my daughter to have her transplant within the week. I didn’t know how they could guarantee that and I didn’t ask. The Nurse said, “Pack your bags. Be ready. The Surgeon could call anytime.”
On the 6th day. One minute past Midnight. The MAYO transplant surgeon called me and said they found my daughter a new liver. He wanted her to report to the hospital within the next five hours.
8 hours and 100 stitches later the transplant was successful. Due to excessive internal bleeding. During the first night in ICU, she had to undergo surgery again to fix the problem. It is not unusual for that to happen.
During the operation, I took a short nap in the back seat of the car. The longest 24 hours of our lives.
My daughter will have to take an Immunosuppressant agent for the rest of her life. But, she is expected to live a normal lifespan.
With the many pounds of water in her body gone. She was unrecognizable. I had never seen this slim woman before who stood before me. The purple bruises are gone. The bags of laxative bottles were thrown away. The IV marks healed. The porta-pot was removed. The walker was dismantled.
This was the first day of the rest of her life.
LESSONS LEARNED
First, get on many transplant lists.
Second, the only reason to go to the university for a transplant is if you have a living donor lined up and approved.
The policy and politics of how organs are distributed throughout the United States are Determined by UNOS. The university and the MAYO share the same donor pool.
The MAYO’s care team is twice the size of the university. They also have an external liver curatorial team whose sole function is to find a deceased organ.
Also, because the university terminated her. My daughter lost the past two years of accrued waiting. In the case of a transplant tie, the long waited patient will receive first consideration. Like many things. The university doesn’t tell you that.
Third, if needed, and if you have time, file a complaint with the proper authorities. Don’t believe the social worker is not a friend of the doctor.
The MAYO has a good customer service department.
Fourth, pray.
Finally, do your research. transplant list.