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April is Donate Life Month, a month to raise awareness about the dire need for organ donors.
Most people only hear about organ donation through TV dramas and movies, and have no idea about the vital need here in the U.S., let alone in the area they live.
According to Tracy Bryan, APR , director of public relations for Sierra Donor Services (SDS)— a non-profit, federally designated transplant donor network serving nearly four million people in northern California and Nevada—“In the Sierra Donor Services’ area (Sacramento and 10 surrounding counties), more than 1,300 people [are waiting] for a lifesaving organ transplant. The need for transplants far exceeds the number of donations in the area covered by SDS, and across the nation. By way of example, there were only 8,125 deceased donors in the U.S. in 2012. Currently, in the U.S., more than 116,000 people [are waiting] for an organ transplant. One third of them will die waiting, because there aren’t enough donors,” says Bryan.
DEBUNKING THE MYTHS
With so many myths and inaccurate information available, it can prevent people from signing up as a donor. Below, Bryan debunks some of the myths.
Becoming a donor will not affect the quality of your medical care. Organ recovery takes place only after all efforts to save your life have been exhausted, and two doctors have declared you legally brain dead.
The donor family pays none of the costs associated with donation.
If you are a donor, you can have an open casket funeral.
Transplants are accessible and available to everyone; celebrity status and wealth do not enter into the equation. Organs are allocated according to medical criteria (urgency of medical need, blood/tissue type, height and weight).
All major religions support or permit donation and most consider it a gift or an act of charity.
MY GIFT OF LIFE
I was always a registered organ donor and supported organ donation, but never in a million years did I think I would need a transplant to save my life. On Thanksgiving Day of 2010, I woke up not feeling well and had some pain in my right rib cage area. After consulting “Dr. Google,” I diagnosed myself with a gallbladder attack and followed up with my primary care physician that following Monday. An ER trip and a three-day hospital stay later, I was diagnosed with hepatitis A—a viral infection that attacks your liver.
Hepatitis A is normally passed through contaminated food or water and only about 3,600 cases are reported each year. I’ll never know what food I ate that gave me the disease; it can take 15-45 days to develop symptoms and the health department was never able to link any other cases to pinpoint a grocery store or restaurant. Nevertheless, doctors weren’t worried; hepatitis A is rarely dangerous and isn’t a chronic illness like the other types of hepatitis (it’s similar to the flu), and I was expected to be better in a couple of weeks.
However, instead of getting better, I got much worse. The entire month of December was pure hell. The virus continued to attack my liver; I was throwing up multiple times a day and my skin turned as yellow as a highlighter. My liver tests continued to get worse, and I was diagnosed with acute liver failure; on December 29, 2010, I was admitted back to the hospital, but this time to California Pacific Medical Center in San Francisco. My New Year’s Eve was spent in the ICU, hoping the doctors could work their magic and my liver would regenerate.
After New Year’s Day, I went downhill fast and was listed on the transplant list with a status 1A, meaning I had less than seven days to live without a new liver. There is no dialysis-type machine for your liver, so they were trying everything they could to keep me alive. I was given blood transfusions to help clean the toxins in my blood, but nothing worked. I was put into a medically induced coma to help preserve my chances of surviving surgery and to help with the swelling on my brain. I was on a ventilator, my body temperature was lowered to 90 degrees, and doctors drilled a hole in my skull to relieve the pressure. January 7, 2011, was the scariest day for my family and friends; my time was running out and without a new liver they were told I would die.
The next day, I received a new liver: My donor saved my life. Waking up after a 10-day coma and being told a stranger saved your life is a surreal experience; so many emotions went through my head. I was filled with sadness knowing someone had to die for me to live. Why was I still alive while my donor was not? It took me awhile to realize my donor was going to die regardless of me needing a transplant. The hardest letter I’ve ever written was the one to their family. What words can describe how thankful I am for the gift I was given? I can only hope that I honor my donor every day by being the best person I can be. Each breath I take is a gift from my donor.
After the Transplant
While I had to mentally process what had just happened to me, I also needed to learn a new way of life, a life of new rules to follow. I learned quickly that compliance is the magical word in a transplant’s life. Luckily I have always been a rule follower so it was easy to adjust. Each transplant hospital has a list of guidelines and below are some of mine:
Pills. After my transplant, I was taking 47 pills per day; I now take 19. They include anti-rejection drugs and other medicine to offset the side effects of the anti-rejection medicine. Before the transplant, I never liked taking any type of pill, so I find it ironic that I now pop 19 easily.
No alcohol. Even though my transplant wasn’t a result of alcohol abuse, I’m not allowed to have any. They don’t want my liver having to work extra hard at processing it. I asked if they would remove my new liver if I did drink, and they wouldn’t, but they couldn’t approve me if this liver failed and I needed another transplant.
No gardening without gloves. Luckily I’ve never been known to have a green thumb and who would want to touch cow manure with their bare hands anyways?
No sun. The anti-rejection drugs I take significantly increase my risk of skin cancer. I’ve managed to go to Maui twice and not get tan at all. My wrinkles love this rule!
No grapefruit. Weird, I know, but it counteracts with my medicine. I missed grapefruit at first, until my husband reminded me that in our seven years of marriage he’s never seen me eat one.
Become a germaphobe. OK, that was not in my book of rules but I have a weakened immune system so my chance of getting sick is higher. I now am the crazy lady walking around with hand sanitizer at the gym, grocery store and anywhere with crowds. I’m also paranoid about food poisoning since that’s what made me sick in the first place!
Living in the Now
I recently celebrated my two-year anniversary of my liver transplant and I’m doing great. Celebrating an extra two years of life has proved I have a long life ahead of me. I no longer consider myself “the sick transplant patient,” but “the transplant patient who has a better life because of it.” I never understood how people go through horrible things and later say they wouldn’t change a thing, but now I’m that person. I can think of myself as unlucky to need a transplant or extremely lucky to have been given a second chance at life, and I’ve chosen the latter. My life is so much better now than it was before the transplant. I wake up each day so thankful for what I have; I truly stop and take a little extra time to smell the roses and enjoy the small things that make life so magical. I think the world would be a much better place if everyone had a near-death experience.
I now use my experience to spread the word about organ donation, by volunteering as a Donate Life Ambassador with SDS, educating the public about organ donation and transplantation, speaking to the media, visiting hospitals and volunteering at health fairs. I hope to alleviate the shortage of organ donors and help more people understand the importance of donation.
Each person has the potential to give the gift of life when they pass away. Sign up by visiting donatelifecalifornia.org, or through the California Department of Motor Vehicles when obtaining or renewing your driver’s license.
FACTS AND FIGURES
The United Network for Organ Sharing (UNOS) is the private, non-profit organization that manages the nation’s organ transplant system under contract with the Federal Government. They keep an up-to-the-minute database of those waiting and of those who are donors. As of January 20, 2013, at 5:38 p.m. EST, the waiting list consisted of:
Kidney and Pancreas: 2,115
Heart and Lung: 49
With so many people on the waiting list, living donation, which offers an alternative for individuals awaiting transplantation and increases the existing organ supply, has become more common. In most instances, living donors are healthy individuals who volunteer to provide a whole organ or a segment of an organ to help someone they know who is waiting for a transplant.
Statistics can sometimes be overwhelming and difficult to understand, since people are added and removed to the waiting list every day. One thing to remember is that every number you view is a person—a person who’s either waiting for a lifesaving transplant or a person who has left a lasting legacy through organ and tissue donation. Each number represents a life: a mom, a dad, a brother, a sister, a child, or maybe even you.