Addiction and Support

This is a hard subject to write about, but it is a fact that my father struggled with alcoholism for over 35 years. When drinking, he was never violent and was always a sweet man, but my mom and I could tell when he had too much and it impacted our relationships with him. Alcoholism and addiction in general are stigmatized in our society. People ignorantly assume it’s a choice. They think, “just stop, use your willpower” or “pull yourself up by your boot-straps and stop being addicted like the rest of us”. These are old ideas that need to die. Science is revealing that addiction is a brain disease. Large genome wide association studies (GWAS) and other molecular biology techniques have been used to identify genetic variants that contribute to an individual’s susceptibility to addiction. Just as some individuals have a susceptibility to cancer, Alzheimer’s or diabetes (*see reference below for more scientific information), others are more or less susceptible to addiction following exposure to drugs or alcohol.

The stigma associated with addiction prevented my dad from being able to talk about it openly and prevented him from getting the critical medical care he needed when he needed it. We need to end the stigma around addiction and start treating addiction like the disease it is.

If you are interested in supporting alcohol and addiction research, please visit the Foundation for Alcoholism Research (FAR) to learn more, volunteer, or donate. FAR is a non-profit public charity that funds a number of University research programs that focus on such areas as causes of addiction, improved identification, prevention, and treatment for addiction and alcoholism.

*If you are interested in learning more, start by reading “Drug addiction: the neurobiology of behavior gone awry” by Nora D. Volkow and Ting-kai Li published in the scientific journal ‘Nature’ in 2004. This article is behind a pay-wall, but I have access and can send a PDF to anyone who is interested.

Medical Incompetence, Stigma, and Steve’s Spiraling Health

– Eric Waite and Loretta Waite

Steve’s liver showed damage from alcohol more than 18 years ago, when he contracted Hepatitis B from a Rosewood resident spitting in his eye. He was in the hospital for several weeks and during that time doctors told him he had to quit drinking due to damage they found in his liver, but he didn’t want to hear it. He would shutdown, refuse to talk about it, and hide his drinking whenever anyone tried to talk to him about it, including medical professionals. If Steve had too much to drink he tended to become reticent and just enjoyed listening to his favorite CDs or watching old shows on MeTV, never becoming violent or loud. We tried numerous times to get him to stop or significantly decrease his drinking, but we stopped short of forcing him into a rehabilitation center.

The extent of his alcohol-induced liver damage became apparent during the summer of 2018, when he went into Greater Baltimore Medical Center (GBMC), a local community hospital, seeking relief from severe back pain, which he thought was a pulled muscle. It turns out it was not a pulled muscle, but instead it was three fractured vertebrae, one of which must have been sustained over five years before as the bone was almost entirely gone, catabolized by the body. The doctors also found massive iron elevation in his blood, almost 10x the normal level, which is termed hemochromatosis. The hemochromatosis was caused by alcohol-induced liver damage, rather than a genetic mutation in a gene involved in iron regulation. The elevated iron was damaging his bones, making them more porous, effectively causing him to develop osteoporosis. This is why his vertebrae were fracturing so easily. The liver damage also meant that he was not producing enough clotting factors, so he would bleed more frequently and it would take longer to stop, meaning he couldn’t receive the back surgery he needed.

Steve received a minor back surgery to replace his lost vertebrae with cement, and to do so they infused him with a double dose of clotting factors so he would not bleed out during the surgery. He woke up rather confused and struggled to write, read, and drive and the follow-up care he received at GBMC was almost non-existent. It was not until about six months later when we sought out a neurologist on our own that we learned he had suffered a minor stroke during the surgery. At that point, he was nearly completely recovered from the stroke, but this was just the start of the incompetent medical care.

It was now clear it was the liver that was the major problem and he continued to see a hepatologist at GBMC, who looked down on Steve because of his drinking and did not provide him with the appropriate care given how severe and extensive his liver damage was. During the next several years, Steve’s health would get worse, plateau for a few months, then get worse again. The hepatologist said the liver would heal itself if Steve stopped drinking, but severe cirrhosis doesn’t just heal on it’s own. Much of the scar tissue that characterizes cirrhosis is permanent, but we thought the hepatologist knew what he was doing. It felt like the GBMC emergency room staff and the medical personnel at GBMC in general stigmatized addiction. They were rude to and dismissive of Steve, we surmise, because of his alcoholism diagnosis. We feel that Steve had to wait longer for services and was treated by some medical personnel brusquely from what Loretta observed in the emergency room.

With Steve’s health continuing to deteriorate, Loretta sought advice from a friend who is a retired ER doctor. After hearing about Steve’s symptoms, he said immediately that Steve needed a liver transplant. So we sought out for the University of Maryland Transplant Center at Baltimore on our own. They saw Steve in early March of 2020, and almost immediately began an intensive medical evaluation to get him on the transplant list. The medical staff at the transplant center were fantastic and did everything they could for Steve, but he ran out of time. His medical team found a tumor on his liver that was likely cancerous and they were very worried about it spreading into the portal vein. If it did spread into the portal vein he would no longer be a candidate for the critical liver transplant.

Steve went into the hospital for the last time on Wednesday, April 29^th because he was so uncomfortable and in pain. He deteriorated quickly in University of Maryland Medical Center’s (UMMC) ICU and died at 9:47pm on Thursday, April 30^th. The tumor had grown and was now invading the portal vein, making him ineligible for the transplant. He was comfortable when he passed, and we were both at his bedside holding his hand.

A few weeks after his death, we talked to a doctor from Steve’s fantastic UMMC team. We asked her if the GBMC hepatologist should have referred Steve to a transplant center sooner (compared to not at all…) and she said absolutely. She said that no matter what the cause (alcohol or not) patients with liver damage as extensive as Steve’s should be referred to a transplant center right away. The medical incompetence and addiction-associated stigma of this GBMC hepatologist cost Steve a critical two-and-a-half years. If we had been referred to a transplant center instead of eventually finding one on our own, he could have received the life saving transplant.

The medical incompetence illustrated here is not an isolated incident. It is rampant in our country, which is supposedly the most technologically advanced in the world, with the world’s best medical care. This is patently false. America has the worst rate of maternal deaths in the developed world (as of 2015), a fact that should enrage every American. The medical care provided by large teaching hospitals such as UMMC, Johns Hopkins or the Hospital of Philadelphia generally provide better care than community hospitals, but we did not know the difference would be so significant. Most people have heard that it is important to get a second opinion regarding medical matters, but Steve’s story should really drive that point home. Always get a second opinion and get it quickly.

Let Steve’s story be a lesson to us all. It is so important to have those tough conversations with your loved ones, whether it’s about addiction, depression, or anything else.