Dr Abalone

I could see the dark wave. As my kidneys failed, toxins made me sick while my body filled with fluid. At night, wracked with pain, I felt the dark abyss: this is what death looks like. Surprisingly, my mind grew sharp and for the first time in my life, I composed a song in my head. I felt my brain digging deep into my soul. The next day I went on dialysis.

I have Alport Syndrome, a rare autoimmune disease that affects 30,000-60,000 people in the US. Among males, Alport’s results in kidney failure. As a result, I lost my kidneys when I was 35 and went on dialysis. A year later my father gifted me one of his kidneys and I enjoyed a second life for 26 years. But I knew it wouldn’t last forever.

Surrendering my life to the medical community was scary. But the experience was like free-falling into a warm blanket. Everyone was warm, supportive, and competent. I was reminded that people in the medical community have dedicated their lives to helping me and others like me. Their support gave me an unexpected comforting feeling.

Still, despite having gone through it once before, the experience was jarring. In a flash, my old life was gone and now I’m strapped to a machine three days a week,  three hours a day. It’s a different state of being. It’s like my body is going: “Whoa, what the heck happened?” But amazingly it adjusts. I can feel it trying to teach a new equilibrium and it’s not a pleasant feeling. But adjust it does and now I live in a new state of existence. And just like my first life after kidney loss, I’ve forgotten what I felt like before.

Walking into the hemodialysis dialysis clinic for the first time in 26 years was surreal. Opening the door I was met with a familiar strong chemical smell. Sitting under bright fluorescents lights I saw a tattered sign on the wall: Every Day Counts. A reminder that my life hangs by a fragile technological thread. As they connected me and injected saline into the lines filtering my blood, my mouth was flooded with a salty taste, ironically invoking my carefree days in the sea.

Looking around I see a range of behaviors in other patients. Some in obvious pain, others asleep or watching tv, most with a blank stare as the toxins and fluids are scrubbed out of our blood. But I am lucky and am able to stay productive during my time on the machine. Others start before me and are still on when I leave and many older patients arrive and depart in a van from a nursing home. Despite the stark reality, the staff is wonderful: cheerful, compassionate, and they conduct their work with a comforting precision.

Still, the experience is dispiriting. During the first week, I could see it: a black hole of despair. Just lean in a bit and live forever in misery; my whole world sucked away in an instant. But instead of looking at what I’ve lost in life I choose to cherish what I have. I am alive. And I am humbled by so many others that cope with far worse situations. In my dark moments, I am strengthened by the many years my courageous mother suffered on dialysis and in hospitals, yet remained a beautiful and wise soul. I am humbled by the indomitable spirit of my friend Chris, who somehow lived a cheerful life with cerebral palsy. And I am even inspired by the strong will of our little cat Momo: born with severe disabilities he still managed to be an incredibly cool cat. Thus, a gift from my suffering is more compassion for others. Compassion has set me free from despair. How much is that worth?

So live in gratitude. I am so grateful to my father and the second gift of life he gave me with his kidney almost 26 years ago. I can’t begin to describe how amazing it felt to have a piece of my father inside me, keeping me alive. It was an intimate connection and truly a miraculous gift.  I am incredibly grateful to my wonderful wife, who supports me despite the uncertainty it creates in our lives. I am so fortunate to have loving, wonderful children that make me proud to be a parent. And I have many supportive friends and co-workers that have stepped up to help. I am incredibly thankful for the amazing doctors, nurses, physician assistants, lab techs, social workers, staff, receptionists, and many others, that have supported me. I am astounded by those that have immediately stepped forward, without even asking, to offer me a kidney. The outpouring of love and support is humbling.

I don’t write this to throw a pity party or draw attention to myself. I’m good, and I have a terrific job. But rather I want you to know what’s it’s like to start and live on dialysis. I want you to have compassion for those on dialysis and to support the medical community in ways they know best. I also want to highlight the need for living organ donation, which is an incredible gift.

I’m blessed with willing family and friends. But not everyone is so fortunate and the wait list for a kidney transplant is long and many individuals will die before ever receiving a kidney. There are nearly 100,000 people on the waitlist. Living donor transplants, which are the most successful and last longer, make a substantial contribution to the number of transplants each year. In 2018, one-third of kidney transplants were from living donors. For more information about donating a kidney see the links below.   It is also important to support legislation that supports donors, such as the Living Donor Protection Act, which protects donors and recipients from insurance and job discrimination.

Today, at home in Trinidad, I went outside during a break in a raging storm and stood facing the sun as it broke through the clouds. Closing my eyes I felt its brillance warming my body. I could smell the sea, hear the waves and the wind, and I felt my body tingling as these sensations flooded through me. Despite everything that has happened, I am very much alive. And I’m determined to make every day count.

Further Reading:

• Living donor kidney transplant — Mayo Clinic
• United Network for Organ Sharing
• Alport Syndrome Foundation
• Dialysis — National Kidney Foundation
• Life on Dialysis — the First 90 days (guide)