By Isabel Stenzel, blood recipient and double lung transplant survivor
Hello Stanford Blood Center donors and friends! My name is Isabel Stenzel Byrnes and I’m a social worker and health educator, currently working for the Lucile Packard Pediatric Weight Control Program. I have a twin sister named Anabel, who is a genetic counselor at Lucile Packard Children’s Hospital. We’d like to share our personal story with you in this blog.
Besides being our places of work, Stanford has special significance for both of us. We both graduated from Stanford University, I got married at Stanford, and actually Stanford Hospital saved both of our lives. Some of you may have even played a role in saving our lives.
Back in 1972, Ana and I were born with cystic fibrosis (CF), a genetic lung disease that affects about 30,000 Americans. At birth, Ana had an intestinal blockage, and required emergency surgery. She received her first blood transfusion at three days of age. Some person out there allowed my twin sister to survive, and to join me in a lifetime of love, joy, and adventure.
CF is a very difficult disease. We developed chronic lung infections by the age of ten, and went in and out of the hospital for intravenous antibiotic “tune-ups.” By the time we were 18 years of age, we had been in the hospital cumulatively about 36 weeks of our lives, each. Also, we had to do respiratory treatments several times a day, every day of our lives, just to keep our airways clear. As twins, we developed a symbiotic relationship and helped each other with these treatments, allowing us to become independent from our parents and leave home for college.
Unfortunately, with each lung infection, our lungs became progressively damaged. One of the worst side effects of severe lung damage is hemoptysis, or the coughing up of blood. The day before my thirtieth birthday, I experienced a massive lung bleed and had a very real out-of-body experience. My dear husband had to witness what the ER staff said “looked like a trauma case.” I believe I coughed up nearly 3 cups of blood, and with limited lung capacity I went into shock and nearly died. I remember waking up on a ventilator in the ICU, and looking up to see bags of red blood dripping into me. I was amazed. Some part of someone else was infusing into me, and I was so grateful. It eased my immense fear, confusion and post-traumatic stress of what had just happened.
The next few months were the toughest times of my life. My lungs continued to bleed despite surgical procedures to block the pulmonary arteries. I was chronically anemic, and received several more transfusions. When one has low lung capacity, it is hard enough to breathe. When one is anemic, and not able to carry the oxygen properly in the blood, it is even more miserable. Each time I received blood, I remember feeling a surge of energylike I had just been given a hit of caffeine! I felt SO much betterand again remember feeling so grateful for the good Samaritans out there who were helping me survive.
During my own struggles with CF, my sister’s story unfolded. Her lung capacity was always worse than mine. At 28, she had 20% of lung function remaining, and was dependent on an oxygen tank to breathe. She was emaciated and chronically fatigued. Despite tremendous fears, she decided to be listed for a double lung transplant. After 16 months on the waiting list, on June 14, 2000, a compassionate family who faced a tragedy said yes to organ donation, and my sister was saved. Her surgery was nine hours long. Because the CF lungs are so scarred, they adhere to the chest wall and removing them leads to massive amounts of bleeding. Ana received 30 units of blood during her surgery. She survived, and within 12 days, she went home to learn how to breathe again, walk again, and live again. Within 12 months, Ana was swimming, hiking, jogging, volunteering and working almost full-time. It was truly human resurrection— all thanks to an organ donor and many blood donors.
Three years after Ana’s surgery, my health declined precipitously. I was in denial of how sick I was, so I had just gotten listed for a transplant. Suddenly, I could not breathe. Just brushing my teeth became an arduous task of suffocation. Within days, I was slipping away, with my carbon dioxide rising to dangerous levels that brought me close to a coma. My twin had to witness losing the closest soul mate of her life. I said my goodbyes to my husband and family, while in and out of consciousness. Days before I went into respiratory failure, I had a spiritual epiphany and kept telling people, “There’s going to be a miracle.” Within days, I coded and was placed on a ventilator. My family prayed for a miracle.
Less than 48 hours later, on February 6, 2004, my family heard five words that changed their lives forever: “We have lungs for Isabel.” Somewhere in Central California, a young man had become brain dead after a tragic car accident. He and I were both on ventilators in ICU together, with our families praying for a miracle at our bedsides. Somehow, fate chose him to go and me to stay. I will never understand why. But this young man had told his mother that if anything ever happened to him, he wanted to be an organ donor so he could help people and his mother obliged.
My surgery was very difficult. My surgeon, the famous Dr. Bruce Reitz, who performed the first heart-lung transplant at Stanford in 1981, said I had less than 12 hours to live, and he had never performed surgery on anyone with a carbon dioxide level as high as mine (it was 140; normal is around 40). I bled profusely like my twin, due to the difficulty of removing my lungs, which literally breathed their last breath. I received 40 units of blood. Within two days, I woke up, thanked God, my doctors, and my lung and blood donors, and started to cherish each and every breath I was granted on this very borrowed time.
Fast forward several more years. After ecstatic days of swimming and winning medals at the US Transplant Games, jogging a half marathon, hiking Half Dome and writing a book together as healthy twins, Ana went into severe rejection. Only 50% of lung recipients survive five years, as lung transplants remain the least successful solid organ transplant. That’s because everything we inhale is potentially infectious, and each infection “wakes up” the immune system, starting the process of rejection. My sister’s rejection was merciless; within eight months she went from training for a marathon to being in a wheelchair dependent on oxygen. Thanks to God and Stanford doctors, Ana was offered a second transplant.
On July 13, 2007, Ana received the gifts of life again in the form of an anonymous organ donor and many blood donors. The second transplant was extremely tricky, as removing already transplanted lungs that have been stapled to the chest wall caused even more bleeding than CF lungs. It was touch and go, and the doctors fought for her life. When I saw Ana in the ICU, hours after her surgery, I was only allowed at the doorway of her room. Her blood pressure was dangerously low and the doctors were still working on her, trying to stabilize her vitals— and give her more blood. Miraculously, just weeks later after a very tough recovery, Ana went home. We started to live again as healthy twins.
Our lives since then have been unimaginable. We make sure to be athletic to cherish the gift of health we’ve received. I’ve started to play the bagpipes to celebrate my lungs and allow the universe to hear my organ donor. My lung capacity is 125% of normalsomething I couldn’t even dream of before my transplant. In 2007, Ana and I published a memoir, (The Power of Two, University of Missouri Press, 2007), and we have traveled all over the country speaking about cystic fibrosis and organ donation awareness. We have been graced with meeting our organ donor families to say THANK YOU. We returned to work, have witnessed the births of our nieces, are leaders in the CF and transplant communities, and have met countless friends along the way. My parents are so, so, so thankful to still have their twin daughters. And, in 2010, Ana got married, and I recently celebrated my 13th wedding anniversary with my loving husband. You see, when you donate blood and organs to save people, you don’t just save one patient. You save the entire family. I am saved because someone saved my twin. My twin is saved because someone saved me. And our entire communities are saved because we can still be here, contributing and trying to make a difference.
My illness was something I never wanted. Being public about it hasn’t been easy. And coping with multiple losses including the high chance of dying young was something I wouldn’t wish upon anyone. But, the gift of my illness is that it taught me to truly, truly live intentionally. And that kind of living has led to these remarkable opportunities. Today, Ana and I have no regrets. Ana and I are the luckiest people in the world.
I want to emphasize that NONE of these opportunities would have been possible without the selfless act of blood donors who went out of their way to help strangers. From the bottom of our hearts and lungs, we THANK THEM for giving us the gift of health. Together Ana and I received over 90 units of blood- probably from 90 different donors. In Japanese, the word for blood is chi.’ Chi is also the word for energy. We received the living, breathing energy from 90 people and our lives now manifest that energy. We are living deliberately for our blood donors and for our organ donors. And our story is just one of millions that blood donors like you have touched.
Since 2009, Ana and I have been blessed to be involved in a documentary film, “The Power of Two,” inspired by our memoir. We never, ever imagined that our life experience with CF would unfold into these extraordinary opportunities! The film portrays the miracle of breath: something that never comes easy for anyone with cystic fibrosis or other lung diseases.
We wish you health more than anything. Right now, stop and take a slow, deep breath and feel your life force enter all the way to the depths of your lungs. May you truly feel our appreciation. May you be blessed with goodness as much as you have blessed others.
Isabel Stenzel Byrnes
To sign up to be an organ donor, visit www.donatelife.net.