I am 61 years old and proud of that fact! I was born in 1959 with cystic fibrosis, a genetic, life threatening, pulmonary and digestive disease. My parents were told that I wouldn't live until the age of 5. Today, the average life expectancy of CF is 47 and will keep increasing because of the research and new therapies that are in the pipeline. CF is a progressive disease and eventually the lung tissue becomes scarred and the airways clogged from dried mucus. The thick mucus made me cough and clear my throat constantly and made me feel as though I was drowning in it. Eventually, I had a very small space in my lungs open for air. I couldn't breathe! I would be gasping for breath after coughing violently for ten minutes or longer. I ended up on full-time oxygen, feeding tube and bed-ridden. My body burned every calorie fighting my "infection" and I weighed less than 100 pounds. I couldn't eat enough and quite often during my coughing exacerbations, I would cough up all the food in my stomach. It became exhausting to put on socks or walk to the bathroom. Even with the oxygen, I still couldn't breathe! Muscle atrophy sets in very quickly and being tethered to an oxygen tube and a feeding tube (I received 1500 calories at night), my mobility decreased. I coughed all day and all night, so I only got an hour of sleep at a time. My lungs were failing me and eventually, my body too.
I was evaluated and placed on the transplant list at Loyola Medical Center in August 1997. I'm fortunate to have had a strong support system with my doctors, nurses, pulmonary therapists, parents, who treated me as a normal child growing up; my husband who took care of me, our twin children and our home daily, plus, he had to work. I fought to live for my 9 year old son and daughter, who were healthy and sweet, and deserved a mom.
The seven months before my transplant, I lived at the hospital more than I lived at home. The day before my transplant, during rounds, all my doctors came into my room and sat on my bed, while one held my hand. I knew that wasn't a good sign. They told me I had about 24 hours left to live and asked how I wanted to handle the situation, knowing I had young children. I requested that they hold my hospital room, because I didn't want to die at home and have my children experience my death. I wanted to go home to hug and say good-bye to my children, husband and parents, planning to return the next morning. That was the hardest conversation I have ever had, telling my children how much I love them and that mommy's going to heaven. And I couldn't cry because, then, I wouldn't be able to breathe. Eventually, I fell asleep, at peace for the first time in a long time. The phone rang at 11:00 at night and it was Loyola saying they could only talk to me. I believe in MIRACLES because I am one. Loyola told me that they had lungs for me and to come back to the hospital. So, I woke my babies back up and told them that mommy was getting new lungs and that I'd be home in a week and I'd be able to breathe!
I arrived at the hospital by midnight. Additional testing was done on me and my donor lungs and everything was a match. I was wheeled into surgery at 6am March 3, 1998 and the transplant took about 6 hours. My family was kept informed of my progress during the surgery, chiseling away my scarred, old lungs and transplanting my beautiful, new lungs, one lung at a time while being kept on a ventilator. When I woke up that afternoon and took a breath, I knew those were not my lungs. I could breathe deep and easy. They were light because of no mucus build up and I could completely fill them with air, like beautiful huge, pink balloons. As the tears rolled down my face with gratitude for my life and grief for a precious life lost, my first question to my doctor was "Who's my donor?". He said that's everyone's first question and they told me what they could, since it's confidential. She was ten years older than me and had been in a horrific car accident and they did everything they could to save her and they did. She lived as a quadriplegic on a ventilator for two years before donating her beautiful lungs to me, the GIFT OF LIFE!
Since the transplant, I have seen my children graduate from high school, graduate from college and working in their careers. I saw my daughter get married and I've held my two healthy granddaughters in my arms. I hope my donor is proud of how I have taken care of our lungs and how I have given back by raising funds for cystic fibrosis, hoping to one day find a cure. I also speak about organ donation to health classes in high schools and at annual donor appreciation ceremonies at hospitals to the heartbroken families that have recently donated their loved ones organs, so they can understand how their loved one is a true hero, saving many lives. I am blessed and grateful for my lungs, my life and the ability to breathe. I thank her for every breath I take!
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. Will you help me by making a donation to my Great Strides team, Valerie's Lungs?
By making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. Together, we are adding tomorrows to the lives of people living with CF by supporting the search for a cure.
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families. This year, due to the COVID-19 circumstances, we're having a virtual Great Strides event Friday, June 5th 5pm ET to celebrate all we have accomplished in the 65 years of the Cystic Fibrosis Foundation.