Chapter 1: Understanding Genetic Testing

From personal experience, I have come to realize that both genetic testing and organ donation are crucial topics that everyone should consider seriously. My family is acutely aware of this necessity.

My mother suffered from a hereditary liver condition that often leads to fatal outcomes. The likelihood of my siblings and I inheriting that gene was quite high. Until recently, our only option was to undergo yearly blood tests to monitor the condition. This approach is common for many inherited cancers, where regular screenings and tests are vital for identifying potentially harmful genes.

With the advancement of AI-connected technologies, scientists have recently pinpointed the gene responsible for my mother’s liver disease, as well as many other concerning genetic markers, including those related to cancer.

Now, a single genetic screening test can reveal or rule out various illnesses. In the past couple of years, I have taken such tests twice and found that I do not carry the genes associated with diseases that affected close relatives. This discovery has alleviated my worries about these illnesses.

As time goes on, genetic testing and counseling are becoming more commonplace. Following my cancer diagnosis last year, a pathologist examined my tumor and recommended a genetic evaluation to assess my risk for additional cancers. The outcome was astonishing and almost felt miraculous. Once again, I was relieved to find no genetic predisposition, indicating I was not at a heightened risk like others.

I urge anyone with concerns about hereditary conditions to consult their healthcare provider about possible screening options. It can significantly improve your quality of life.

Chapter 2: The Case for Organ Donation

My mother and her family had Hemochromatosis, a genetic disorder that prevents the liver from processing iron effectively. While iron is typically seen as an essential nutrient, for patients with this condition, it can be detrimental.

In cases of liver failure, organ transplants often become the only viable option. The long waiting lists and unpredictable availability of organs make it imperative for individuals to consider becoming organ donors.

Both my mother and her brother were fortunate enough to receive liver transplants in their mid-60s, granting them an additional decade of life. Liver failure is a gradual and silent process that erodes health and ultimately leads to death.

In the 1980s, when my mother and uncle faced this crisis, several doctors overlooked the diagnosis until it was nearly too late. Today, healthcare providers utilize a combination of genetic tests, blood tests, imaging studies, and tissue samples to diagnose liver failure earlier, allowing for timely intervention.

Despite advancements, the number of organ donors remains insufficient. While we hope for the rapid development of 3D-printed organs, the reality is that patients currently rely on human donors.

Chapter 3: Witnessing the Transplant Journey

Doctors observed as symptoms gradually compounded, obscuring my mother’s cirrhosis diagnosis until it was almost too late. We witnessed her physical transformation—her skin turned yellow, her body began to wither, and her facial features changed drastically.

She was often unaware of these changes, but my family and I were not blind to them. As her condition worsened, she moved as though caught in slow motion, often requesting that we slow down, as our pace gave her headaches. When we pointed out her changes, she reacted with childlike distress.

As the illness progressed, her mental faculties began to falter sporadically; the natural chemicals in her brain were thrown into chaos due to her failing body. Our lives revolved around doctors and hospitals, as fear loomed over us, knowing we were losing her to cirrhosis.

Finally, after numerous consultations with specialists, a doctor identified the culprit: Hemochromatosis leading to total liver and kidney failure. Her only hope lay in a transplant—a potential miracle. My mother, the person who nurtured and shaped me, had one slim chance at survival, hinging on the death of another individual.

At that moment, it became a race against time. Doctors informed us, “She has less than a week. We need to find a donor match, mobilize a team to retrieve the organ, and start the procedure within 12 hours of the donor's passing. We’ll prioritize her in the system… and hope for the best.”

The national donor network felt like a game of chance for my family, but by some miracle, we received a call from Rush St. Luke’s Hospital in Chicago. My parents boarded a Lear Jet, their minds racing as they flew through the night.

Meanwhile, surgeons were on a parallel flight, securing the organ from a motorcycle accident victim in California. My family anxiously awaited in a small hospital room. Three highly skilled surgical teams, with a cumulative experience of over a century, prepared to perform a 26-hour procedure to give my mother a new lease on life, thanks to a 29-year-old man from California.

Later, his parents reached out to mine through the hospital, expressing their comfort in knowing their son had given someone a chance at life.

If you want to witness a miracle, visit a transplant unit. Medical professionals can extend life through various organ transplants, including kidneys, liver, heart, lungs, pancreas, intestines, stomach, face, corneas, and more.

Anyone can become a potential organ transplant recipient through unforeseen circumstances, and anyone can be an organ donor by simply signing their driver’s license. I encourage you to consider signing up for organ donation and to discuss genetic testing with your doctor.

I am grateful that this story was featured in Medium, thanks to @JamesBellerjeau, curator of the Pragmatic Wisdom publication. My hope is that this narrative inspires others to consider organ donation and explore genetic testing for the health of themselves and their loved ones.