Melanie’s story: A life made possible by organ donation

It’s extraordinary because I almost lost my life decades ago. Nearly 30 years ago, in the summer of 1995, I was just a 10-year-old kid. Happy-go-lucky and healthy. I was the fastest runner in my 5th grade class – I could beat the boys at that age, which gave me endless enjoyment. I had a pink phone with push buttons that plugged into the wall and I’d lie on the floor curling the cord around my finger as I gossiped with my best friend about boy crushes and other preteen priorities. The film Clueless came out that summer, but I was more interested in Disney’s newest classic: Pocahontas. I loved to sing and dreamed of one day being the voice of a Disney princess. Disney princess… or be a painter. Those were my two career aspirations and I hadn’t quite decided yet. I had my whole life to figure it out… at least that’s what we thought.

I had graduated fifth grade that May, but my summer break excitement was soon snuffed out by a flu diagnosis. Who gets the flu in May?! I was tired and weak, and I couldn’t hold down food. It was hot out and I felt absolutely miserable, but I didn’t want the flu to spoil my summer fun, so we carried on with weekend getaways, birthday parties, and playdates. Weeks passed, and then a month passed… and strangely, I was still sick with the flu. One night in June, my family and I were walking to our car after dinner, and I had to stop every few steps to catch my breath. I remember holding onto a light post and gasping for air, as my mom and older brother watched in utter confusion. What in the world was wrong with my body?

None of us knew at the time, but as you may have guessed… this was not the flu. It was my heart. A rare genetic disorder was suddenly destroying this mighty muscle, causing it to deteriorate into a mass of scar tissue, doubling its size and severely restricting its movement. As my heart failed, every part of my body started to fail with it. I was dying and we didn’t know it.

By the end of June, we had finally discovered the first clear sign of heart failure – swollen ankles. And by July, I was in the care of a cardiologist, in and out of the hospital, taking several different medications to try and help my heart recover. Nothing worked. My 10-year-old body was so frail and breathless, I could barely walk across the room. The color in my face had faded to ashen gray and I was wasting away into skin and bones — you could see the outline of each of my ribs protruding through my chest and my heart pounding so erratically, so forcefully that my tiny body shook with it.

By August, my body was shutting down, and I was hardly able to stay awake more than a few hours each day. My situation had quickly become dire, so my mom sought an urgent second opinion with a heart transplant team. That same day, I was hospitalized in the Cardiac ICU and my name was added to the very top of the heart transplant waiting list. I had only days to live. My heart was ready to give out at any moment. But it didn’t. One week after being admitted, my nurse jolted me awake at 4:00 a.m. with the news that a new heart was on its way. A 19-year-old boy had lost his life… and he was going to save mine.

That day, the end of my story changed. Because of my donor, I got to LIVE. My mom didn’t lose her baby girl. My brother didn’t lose his little sister. And I got to be healthy kid again. I got to run faster than the boys again and grow into a teenager with pimples and drama, and I got to paint and sing and go college and spend a fortune on grad school (thank you all for student loan forgiveness!) and fall in love and get crushed by love and bounce back and travel the world and build a career and get married and buy a house and have a BABY! My donor gave me ALL OF THIS!

I got to live so long, in fact, that I outlived my first donor heart. Organ donation is miraculous, but transplant medicine can be complicated. Transplant patients must take many medications that weaken the immune system to prevent rejection of our organs. But these medications can cause complications – including kidney damage. And if you’re lucky to enough to live for many decades, as I have, hearts can also develop a not-well-understood disease which causes the arteries to harden and the heart to fail. It’s a very long-term complication. By age 35 (when my baby girl was just 1 year old), I suffered a heart attack and had to be fitted with an internal defibrillator to prevent sudden cardiac death.

I was dying all over again – this time I needed both a heart and a kidney to survive. I got to wait at home this time, tucking my daughter into bed every night, savoring every snuggle and every kiss, not knowing whether that day would be the day I got the call or the day my precious donor heart would stop. At 10 years old, I had my whole life ahead of me. This time, everything I had built – my beautiful life, my beautiful family – was all slipping away. The thought of my little girl losing her mama was more than I could bare.

In April 2022, another donor saved my life. Their heroic last deed saved me and my family.

My husband didn’t lose his wife. My mom and brother were spared heartbreak… again! And my daughter – the most precious thing in the entire world – gets to keep her mommy. And I get to stay here and watch her grow and do all of the amazing things she’s going to do and that is simply EVERYTHING.

My first donor gave me nearly 30 years of life. And my second donor has given me the gift of hope for DECADES more. I am here, turning middle aged, blissfully excited for the extraordinary opportunity to grow old — because these two remarkable people said YES to organ donation.