Pieces of Me (27 page)

Dear Reader,

Obviously my bias is toward organ and tissue donation. Maybe it’s because of the health issues I’ve faced all my adult life, living with unrelenting pain, but I don’t consider “me” attached to the body I’m in. If you want to call that my soul, or my energy—whatever you call it, I know that what makes me Amber isn’t tied up in this broken body. When my body dies, I won’t be here. To be honest, with my medical history, I don’t know which, if any, of my pieces are useful—but I will leave that up to the experts to decide.

When I began this story, I knew who Jessica was immediately, but shortly thereafter, I met Vivian. From the beginning, I knew Vivian was a force of nature, received Jessica’s heart and lungs, and dealt with the complicated and often overwhelming genetic disease cystic fibrosis.

There is a lot of medical information in this story, and to the best of my ability I’ve kept it as accurate as possible. I have greatly accelerated the time it takes for a person to heal and recover from an organ transplant. That can take months, if not years. I sped up the process to keep the story moving, not to minimize or diminish
the journey. I also know that treatments, medications, and science are ever-changing fields and each body is different. That said, I made choices for these fictional patients that might be contrary to what you personally know or understand. I ask your forgiveness for mistakes and oversights.

As of 2012, the potential donations of one deceased person saved the lives of up to a dozen others and improved the quality of life for fifty more. That’s an amazing amount of good that can come from a tragedy. Without organ donation the tragedy of one death is multiplied by at least two. There are many more people who need organs than those willing to donate them. And while great strides have been made on using living donors for organs like kidneys and livers, things like hearts, corneas, and tissue donations can only be used after death.

Give thought to whether you want to be an organ donor. There are many valid reasons to decide not to. But if you feel strongly one way or another, you need to have a conversation with your family. Consider a family plan. It’s much easier to make decisions in a moment of crisis if everyone already knows their loved ones’ wishes. This is a difficult conversation to start but often can elevate a family bond.

You can pledge to be an organ donor on your driver’s license, at
donatelife.net
, and on Facebook.

For more information, visit:

United Network for Organ Sharing—
unos.org

Children’s Organ Transplant Association—
cota.org

U.S. Government Information on Organ and Tissue Donation and Transplantation—
organdonor.gov

American Transplant Foundation—

american​transplant​foundation.​org

I knew in my gut Vivian had CF, but other than a vague idea that it was a disease that affects the lungs and the knowledge that those born with it die young, I had to start at the beginning. There is always an aspect of serendipity to my writing—maybe it hearkens back to how I started writing in the first place, but for whatever reason, serendipity is often what tells me I’m in the right place with the right story.

Cystic fibrosis is genetic. While it may affect more than one sibling in a family, it is not contagious. You cannot catch CF. At the most basic level, the cells in the body of a CF patient don’t properly regulate water and salts. This thickens the mucus in the body, making it much harder, if not impossible, for the respiratory, gastrointestinal and digestive systems, and reproductive systems to function properly. CF is not a new disease—there are writings from the sixteenth century that talk about salty babies dying quickly. But in the last fifty years strides have been made in treatment and quality of life for those facing this disease.

As of 2013, the average life span of those diagnosed with CF is thirty-five to forty years. This is a huge improvement, but that’s still less than midlife for most Americans. And like Vivian, those who have CF lose many friends and hospital mates. Educate yourself by checking out available resources at:

Cystic Fibrosis Foundation—
cff.org

Boomer Esiason Foundation—
esiason.org

The Breathing Room: The Art of Living with Cystic Fibrosis—
thebreathingroom.org

The liver is the only organ in the human body that has the power to regenerate, which is why living donor transplants can be so successful. A portion of the donor’s liver can be removed and it will grow back to its full function and size within both donor and recipient. There are genetic diseases that affect the liver, as well as viruses and cancer. The liver filters poisons outside the body, so alcohol, drugs, and toxins can also damage the liver, leading to failure. For more information, visit:

American Liver Foundation—
liverfoundation.org

Columbia University Department of Surgery’s Center for Liver Disease and Transplantation—
LiverMD.org

What you need to know about kidney diseases

The kidneys have an important and complicated job in the human body. They remove waste from the blood, balance fluids in the body, help regulate blood pressure, and produce red blood cells. Kidney disease can be acute (right now!) or chronic (over a period of time). The main causes of kidney disease are congenital (born with), inherited from family, or diabetes and high blood pressure. Most people can function well with one kidney, which is why it’s possible for living donors to give one kidney. African Americans, Pacific Islanders, and Hispanic Americans have a higher risk and incidence of kidney disease. Learn more at:

The National Kidney Foundation—
kidney.org