April is National Donate Life Month. In honor of that, I want to take a minute to talk to you about something that is very important to me and very close to my heart. I want to talk about being organ donor.
To start my story I want you to take a look at this amazing and beautiful woman.
I am pretty sure that she’s either laughing at a really dirty joke or my dad is flashing her just off camera.
That foxy lady is my mom. And she’s pretty awesome. Awesome Sauce awesome. I’ve got tons of stories that I could tell you about her that will convince you that she is the coolest mom ever. When I was in high school she drove the get away car so we could toilet paper a classmate’s house who had decorated our trees first. I remember her introducing herself to some of my friends with a dirty joke, which shocked and awed the crowd. She once made an entire feast of Gross Grub for a school Halloween party and completely creeped out my entire class. See? Pretty awesome, right? Who wouldn’t love a mom like that?
I just had to share this picture because it’s my favorite picture of me and Mom. That little cutie on the right, the one with the mullet, is me. The average looking squirt on the left is my twin brother. We love our Mom a lot and she’s always been really special to us. We used to kiss her on either side of her face and giggle and say we were making a “Mommy Sammich”.
So by now, you are reading this and thinking, “a woman this awesome surely cannot really be alive!“
She is and all because of a kind stranger who put the words “organ donor” on his driver’s license.
My mother has an autoimmune disease called Primary Biliary Cirrhosis, or PBC . The easiest way to explain the disease is that the body slowly attacks the liver for no reason, because sometimes our bodies can be jerks like that. I am sure that all of you are incredibly intelligent people, but I want to take a moment to address some comments I have received in the past from ignorant people. This disease is an autoimmune disease. You automatically have it. It cannot be transmitted from one person to another. Also, this disease has nothing to do with substance or alcohol abuse. Sadly, you would not believe the number of people who have made comments assuming my mother is an alcoholic or promiscuous – neither of which are the case. Her body is just a jerk.
A PBC diagnosis is not a death sentence. You can live your whole life and never suffer from it. When my mother was diagnosed there wasn’t much known about it and she had watched her father suffer and pass away because of it. She handled it gracefully and healthily for years without anyone being the wiser. I was 11 years old when she told my brothers and me about her disease; almost 13 years after she was diagnosed. She had hit a rough patch and wanted to let us know what was happening, so that we would be prepared. The amazing thing about the liver though, is that it can heal and rebuild itself.
Let’s skip a few years and go to January 2006. My mom’s latest check up showed that her liver wasn’t in bad state and she’d be okay until her next check up. She had steadily and slightly had been getting worse (but still not bad) in the years since her diagnosis. Towards the end of that month something happened and she got really sick and starting turning yellow. We’re not quite sure what happened. At the time it was thought that maybe she had a gall stone, but we never really found out one way or another. Within a few weeks her liver function levels just dropped. She went from a slightly less than healthy liver to liver failure within a matter of weeks. The doctors told her that her only chance of survival was a liver transplant.
There are a lot of serious rules and regulations about going on the transplant list. They base it on need, blood type, health, and a whole slew of different factors. It is completely anonymous. People’s ranking on the list can change based on the need of another. Also, people can wait for years for a transplant only to be deemed too unhealthy for surgery; you have to be healthy enough to survive the transplant in order to be on the list.
My mom got so sick so fast, that once her testing and paperwork went through and her case was evaluated, she became the first person on the waiting list for a liver transplant. 3 days after she went on the list she was in surgery getting her new liver. If that isn’t a true miracle I don’t know what is.
It was a hard few months. I was getting ready to turn 18 and graduate from high school when all this was happening. My mom spent some time planning her own funeral and getting her last wishes together in the event that she never got called in for surgery. It was an incredibly hard time for my entire family, and can’t think of any other event that brought us closer to each other. We were always a strong and close family, but at the threat of losing Mom brought us even closer and made us even stronger. Through the entire process I think the strongest and most graceful person was Mom. While we all tried to stay strong and calm for her, but she was strong for us.
We never spoke in “ifs” – only in “whens”. It was never “if” she got the transplant it was “when”. As a matter of fact, the only time I remember anyone coming close to the word “if” was my Mom on the night she got called to the hospital. I was at school pretty late, at the dress rehearsal for a play I was in. One of my instructors (bless her heart) walked across campus to tell me that my brother had called the office to let me know about the call. She sat with me while I called Mom to find out the news. The last words she said to me before she hung up were this:
“Ellie, I want you to know that no matter what happens I have always and will always love you. Forever and a day.”
It took me a while to stop crying enough to tell her that I loved her too, and that I would see her as soon as she came out of surgery.
She went into surgery at around 1:00 AM on April 20, 2006. At around 3:30 PM that same day the doctor came in the waiting room to tell us that she was out of surgery and we could see her, 2 at a time, in the ICU. My dad and I were the first to go in. I held her hand and tried not to cry and told her I loved her. It was one of the roughest moments of my life. She told me a few days later that she remembered hearing my voice.
This is the two of us in December 2007. We look dang fine in those hats too if I must say so myself.
He recovery process was a hard one. We had to be extra careful about cleanliness and she needed a lot of help for a while. She was in and out of the hospital for a couple months with various issues that would pop up. I found my first white hairs the day I turned 18 – one month after her transplant. I am pretty sure that my premature graying is entirely her fault.
This year will be the 7th anniversary of her transplant and we celebrate every year as if it were another birthday. We eat cake and ice cream and she always gets a ton of cards in the mail.
Every year around this time I think about how lucky I am to still have my Mom and all the events that she’s been able to be a part of since she was given her second chance at life. Although she was too sick to see me graduate from high school we still threw a big party to celebrate when she was healthy enough to be around people. She was there when I graduated college, and the two of us planned a spectacular wedding and had a blast doing it.
This is me and my mom on my wedding day.
My wedding day was a few days before the fifth anniversary of her transplant which made an already super emotional day into a crazy madness emotional day. When she helped me put on my dress and clasped her pearls around my neck for my something borrowed we were struggling not to cry. She whispered that 5 years prior, when she was so sick, she had thought that she wouldn’t live long enough to see this day. I asked her tearfully if she thought there wasn’t a man crazy enough to marry me. And we laughed, because that’s us. We laugh big, loudly, and as often as we can.
Mom’s disease is in remission and she is doing amazingly well and feistier than ever. We are all thankful that someone was so generous and donated a liver to my mom. She got to be there for some many important events in our lives – high school graduations, going to college, watching me and my brothers all fall in love and get married, and she got to meet her first grandchild (my adorable nephew) and she’ll be here for all the rest.
So now that you’ve read the story of how an organ donor saved my mom and my family I would like to ask you to consider becoming one yourself. If you already are, you are the coolest! If you are not, I’d like you to consider it. Here are some great sources where you can learn more about the process and how to register.
The Gift of a Lifetime - this site talks about the process of being put on the list and is a great source for information for educators.
Donate Life – This organization is dedicated to educating people on organ transplantation and helping people register to become a donor. They do a lot of work dispelling a lot of harmful myths and misconceptions around organ donation.
Organ Procurement and Transplantation Network - This is a government site that collects and maintains data as well as more detailed information regarding the regulations of transplantation.
I shall leave you with one last thought.
Waiting list candidates 117,704 as of today 3:18pm
Let’s see if we can make a difference.