Do You Believe in Guardian Angels
A story of my daughter 's fight for life
“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 drunk roommate stumbled upon 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, and needed a liver donor.
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.
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 quickly went downhill.
Hostile, belligerent, hysterical, confused, and neurotic. Every day was an emotional roller coaster ride. Followed by nights of screaming in pain.
I was criticized for being a bad care helper. A bad father. It was all my fault. It was disrespectful but disrespectful of what she never explained. Then she threw a knife, dishes, or anything in reach at my head.
What I didn’t understand was one of the effects of liver disease 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. Blood transfusions. 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 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 from 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 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. Like a step-by-step guide on what the program expected from the patient and vice versa. The communication between the patient and this transplant coordinator was none.
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?” I asked. 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 follow-up failure were not only blamed on my daughter. But despite the nature of her medical condition held it against her. It was like a grade school tardy report.
No one reached out to her or at least sent a warning letter.
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 channels. I was ignored.
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 that were 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. Members of my own family said she made her own bed and had to lie in it.
Alcoholism 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
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? Good luck!
The reason given “inadequate participation in your care.” I was livid. These people were in denial. You couldn’t hold them accountable for anything.
I got out her Life Insurance policy.
My daughter felt betrayed and destroyed. She wanted to commit suicide.
I called the MAYO and 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.
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, social stigma, 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.
The transplant was successful.
My daughter will have to take an Immunosuppressant agent for the rest of her life. But, she is expected to live a normal lifespan.
First, get on multiple 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.
Even though the University and the MAYO share the same donor pool they are not equally staffed. The MAYO has an external team whose sole function is to find an organ. Like many things. The University doesn’t tell you that.
Third, file a complaint with the proper authorities. Don’t believe the social worker is not a friend of the doctor.
Finally, do your research. [transplant list.]