To the girl who lost her life and gave me back mine.
I never thought I would reach 50, let alone 60 years of age. And, to reach 60 healthier than I have been for the past 33 years? My life is the definition of a miracle and I am beyond blessed because of you.
This month is National Donate Life Month and I want to recognize you, my angel donor, and your selfless family. For your parents to be able to think of strangers when faced with the loss of their precious daughter, especially a child, is the very definition of grace and generosity.
My gratitude is immeasurable so I share my story as a small way to honor the enormity of what your donation has meant to me and to my family.
I was the typical Southern California girl next door. In fact, I was Girls Gone 50 co-founder Kathy Sjogren’s actual childhood next-door neighbor growing up in LA. We stayed close even after going our separate directions for college.
After graduation Kathy and I backpacked through Europe and then were roommates as we started off on our careers. It was 1985, I was 27 years old, and things were pretty normal…until the night I died.
I was dancing with my then boyfriend (now husband) and his friends visiting from Minnesota at a club in the Marina.
I felt faint and, out of the blue, experienced a sudden cardiac death episode on the dance floor.
I didn’t know it at the time but sudden cardiac death (SCD) is an often undetected electrical malfunction of the heart that strikes teens and young adults, usually during exercise. Many never knew what hit them as most first episodes are fatal.
Mine would have been one for the books as well, if it weren’t for a nurse and two off-duty detectives who just happened to be in the same nightclub that evening.
These miracle workers did not hesitate to get on the floor and administer CPR. They gave me CPR for an unheard of 21 minutes because the paramedics who were called had gotten lost! (This was way before smartphones and map apps.) Years later, we joked they could have literally carried me across the street as the hospital was right there.
I spent the next four months in the hospital where I was treated with experimental medication to control the crazy arrhythmia. A year and a half later, an automatic implantable cardioverter defibrillator (ICD) was implanted in my chest, which meant that I could now carry my own “paramedic” 24/7.
With my new ICD safety net there was no stopping me and my heart, now nicknamed “Sparky” because of its screwy electrical wiring.
My wonderful best buddy, Brad, still asked me to be his wife even after knowing I faced a very uncertain life span. We married and worked corporate LA for many years before deciding -- with an unknown future -- that we were going to be crazy and pursue an entirely different lifestyle. We sold the house, packed up the dog and cats and moved north where we became owners of a resort in the middle of the Washington Cascades.
Medical care for me now involved a three-hour drive over the Cascades to Seattle. But we felt we needed to get away from it all and start living our life adventure that we had always dreamed of. We were not going to let my disease define us.
Fast forward over the next two decades during which I had three more sudden cardiac death episodes, a gazillion heart tests, blood draws, X-rays and medications as well as a total of eight implantable defibrillators, another cracking of my sternum for open heart surgery #2….and the biggest blessing of all — the miracle birth of our daughter in 1992.
By 2013, I had been in what was classified as “end of life” heart failure for about three years. My goal was to stay alive long enough to see our daughter graduate high school in 2015 and send her off to college so I knew she could “fly” on her own.
The power of positive thinking, my supportive family and friends, my faith, and lots of laughter helped me through those final years of heart failure.
I continued to work with my husband as owners of our successful lodge, despite now daily 12-15 pounds of water gain and drug-induced elimination as my heart failed. I took massive meds to stay alive.
My daughter was the one who asked me to please stop saying “no” and go onto the transplant list. She feared there was no way I was going to make it for two more years to see her graduation.
She was right. In May it was determined I was now too high a risk for the University of Washington Medical Center’s heart team to care for anymore. I was devastated. The medical community I had relied on to keep me alive was now unable to help me any further.
However, this was another blessing in disguise.
My physician transferred my care to Cedars Sinai Medical Center in LA, the top transplant program in the nation. The doctors at Cedars agreed with me that it was amazing I had lasted this long. They let me stay at home in Washington until things got worse.
I was still banking on that being another two years.
Two months later I was flown to LA and entered Cedars via the emergency entrance. My entire body was filled with fluid and the meds were no longer effective in helping me eliminate them. I was dying.
They moved me to 1A, top of the transplant list. Two days passed before the doctors sat us down and explained that finding a match in such a short time frame was impossible. It appeared I was going to be a difficult candidate to match.
But they had an incredible solution. Their answer was to remove my heart and implant a total artificial heart (TAH) into my chest.
WHAT??!! Transplant was hard enough to digest, but now this? Being alive with no heart in my chest cavity, just a machine?
My brother helped ease my mind and summed it up: Without it I was going to die. So I signed the consent for my third open-heart surgery.
On July 19, 2013 I said goodbye to “Sparky” and awoke with no heart except a very large, and really loud, machine I named “Sammy”. I had a love-hate relationship with that thumping, cumbersome machine. It blessed me with continued life and allowed me time to actually gain back some strength and energy, but he was so disruptive to my sanity with his continual thump, thump thump. But in the end this was another medical miracle that came along just as I needed it.
Having the TAH machine was supposed to be a temporary “bridge to transplant” for perhaps a few weeks or maybe a month. But it became my reality for just over six months. My kidneys failed. I was put on dialysis as well, 1,300 miles away from my family.
Miracle again. My family from Washington, Oregon and Northern California took shifts coming down to LA. Even more amazing, my childhood, college and career girlfriends, from when I lived in Southern California 20 years before, were there in rotation. I was never alone at the hospital.
My girlfriends, including Kathy, my sister and sister-in-law were all “Girls Gone 50” or pretty close to it in their 40’s. My daughter, nieces and nephews in their teens and 20’s, my dad in his 80’s: Everyone pitched in to keep my spirits high.
This gift of family and friends is what I will always treasure. I firmly believe having a supportive network is key in surviving and thriving when faced with any type of difficulty. I honestly doubt I would have made it this far without my gang.
On December 15, 2013, tragically you lost your life, but through your gift of your heart and one of your kidneys, I was given my life back. I will never forget you.
As Maya Angelou might say, “You are the rainbow in someone else’s cloud.”
It is now four years and four months post transplant and I have never been healthier in my adult life. This gal just hit the milestone of 60 and is saying good bye to her 50’s with glee! Not many folks I know are proud to boast the Big 6-0, but I am celebrating! Each day is a gift to all of us and we should each celebrate the gift of our lives every day.
Update: As I celebrate 5 years post-transplant of my new heart and kidney, my journey continues to be full of fun, adventures and gratitude for the gift of life. At my 5-year angiogram in December the doctor and I marveled at how beautifully my donated heart was pumping strong in my body as we watched it live on the monitor. The doctor was giddy at how wonderful I was doing as I had been such a difficult patient to match and by all indications their expertise and medical advancements had been spot on as my angel donors heart was radiant in my chest cavity.
Like many 60 year olds, I admitted I was a bit lazy and needed to get back on my walking regiment, but that I have continued to eat healthy with lots of fresh vegetables and fruit and minimal animal protein, definitely helps. I love cooking and creating new recipes for our Lodge guests to enjoy.
In 2019, I have been enjoying winter walk /snowshoe treks with our two dogs, Millie and Sierra. Their antics in the snow keep me laughing. Plans are in the works to reach another Cascade alpine lake this summer, Lake Stuart, so I will forward an update to the blog when I reach my hiking goal! Get out and enjoy the gift of your life too.
April is National Donate Life month. If you are not already registered to be a donor, please consider signing up now and ask family and friends to do so as well.