Author: This blog is written by Nikki Malnar, previous Children’s Minnesota patient until transitioning to adult care.
Nikki has cystic fibrosis (CF), a complex genetic disease that affects about 40,000 children and adults in the United States. The disorder produces thick sticky mucus in the lungs, pancreas and other organs. The mucus can clog airways that trap bacteria leading to infections, inflammation and possibly respiratory failure. It can also affect the absorption of nutrients resulting in malnutrition or block bile ducts causing liver disease. You can sign up to receive email updates from her at www.nikkisnewlungs.com or follow her on Instagram @nikkisnewlungs.
My diagnosis
I was diagnosed with cystic fibrosis (CF) at the age of 5 after being rushed to a local hospital with a prolapsed rectum. Trying to determine why this was happening, the doctors ordered a sweat test for CF, but it came back inconclusive. My mom was concerned that my lack of weight gain and salty skin were eerily similar to the symptoms that afflicted my dad’s niece who passed away from cystic fibrosis as a child. She insisted on a second sweat test which confirmed her suspicions. They were told to take me home and love me for the few years I might have left. The life expectancy at the time for a CF patient was 8 years old.
The prognosis might have been grim, but my parents were determined to let me live a life as full as possible. At the time, there were two lines describing CF in my dad’s medical journal. My parents accepted the challenge and learned everything they could about the disease. Before the vibrating vest was invented here in Minnesota, my parents regularly gave me manual percussion treatments by pounding on my back and chest to help release the mucus that was clogging my lungs. They encouraged me to engage in dancing, gymnastics and skating — activities that, unbeknownst to us then, helped maintain my lung functions. I eventually focused on figure skating.
A life-threatening situation
One spring Sunday in 1992, I stepped into the emergency room (ER) of Children’s Minnesota, at 16, not realizing how close I was to a life-threatening situation.
As an active member of the U.S. Figure Skating Team, I had just returned from an intense program at the Olympic Training Center in Colorado Springs and performed in three local shows over the weekend. Despite these exertions, I mistook my symptoms for a mere cold. However, the reality was far graver. An X-ray revealed a collapsed lung.
Dr. John McNamara, a pediatric pulmonologist at Children’s Minnesota who has since retired, ordered a chest tube and I stayed on the 6th floor for the next 10 days.
After returning to the east coast to resume training, I would fly to Minnesota every few months to see Dr. McNamara. Often, this meant checking in to Children’s Minnesota for a week or two for a “tune up.”
One time, I happened to be in Minnesota and was skating an exhibition program for a group of people that helped build the Mariucci Arena before it opened to the public. During the performance, I started spitting up blood. We still finished the program. As we were taking our bows, I pointed to my parents to meet off the ice. They immediately whisked me away to the Children’s Minnesota ER again. There were MANY of these types of trips during my adolescent and young adult years.
A regular guest on the 6th floor
After countless lung infections, I was becoming allergic or immune to many of the available medications which meant longer hospital stays. Sometimes, I would check in to 2525 Chicago Avenue’s 6th floor for six weeks at a time to try and remove the mucus in my lungs or address complications from cystic fibrosis related diabetes.
Being a regular guest on the 6th floor, one definitely gets to know the nurses, respiratory therapists and hospital staff very well! They became a second family to me and I even claimed my own room. We called it “The Suite” because it had a big bathroom and looked at the downtown skyline.
It was during this time that I met a young receptionist who worked for “Dr. Mac.” These days, she goes by the name, Dr. Brooke Moore, pediatric pulmonologist and medical director of the cystic fibrosis program at Children’s Minnesota.
Little did I know Dr. Moore would be someone who would be by my side throughout life.
Transitioning to adult care
During one routine checkup, Dr. McNamara suggested I may need a lung transplant some day and it would be a good idea to get established with an adult CF program. I was being aged out of Children’s Minnesota. There were plenty of tears shed that day, but it was a wise decision. I was a 25-year-old patient at a children’s hospital, but I was terrified to leave my care team.
Adult programs were rare because CF patients didn’t live long enough to become adults. As people with CF started to thrive more, they started an adult program at the University of Minnesota. Fortunately, they also had a great transplant program.
Waiting for a lung transplant
The age of 30 was when my health really started to decline. My lungs were permanently scarred and were slowly filling with fluid making it feel like I was drowning in mucus. I had been wearing oxygen at night for four years, eventually needing it throughout the day. For eight months of the year, I had a Hickman I.V. line sticking out of my chest to deliver antibiotics. Finally, in June 2010, this 35-year-old was approved as a candidate for a double lung transplant. The next agonizing wait had begun.
The three years I waited on the lung transplant list were brutal. Raising my hands above my head to wash my hair was challenging. I coughed up blood every night. My lungs were functioning at 19%. My only hope was to stay alive until a matching set of lungs became available. Finally, in August 2013, the call came in and I received my two new pretty pink lungs from my donor angel. What an amazing gift!
Life after my transplant
It took about a year to teach my body the mechanics of breathing again. From there, my breathing slowly returned to normal. My doctor finally gave me permission to go sky diving to celebrate my fifth lung-iversary. It was an honor when Dr. Moore and her husband decided to jump out of a perfectly good airplane with us.
Over the years, we have become friends and now sit on the board of the Cystic Fibrosis Foundation together. I also enjoy being an ambassador for LifeSource where I speak with companies, schools and driver’s education classes about organ, eye and tissue donation.
The last 15 months, I’ve been battling anal cancer and the aftereffects of radiation and chemotherapy. In the last couple months, I’ve ditched the wheelchair and manage to get around with walking sticks. Most importantly, I’m now cancer free!
Grateful for Children’s Minnesota
I am so grateful to everyone at Children’s Minnesota’s hospital in Minneapolis. I am now 48 years old. This would not have been possible without the excellent care I received when I was younger. Children’s Minnesota helped set the foundation for me to live longer than expected. The CF programs in Minnesota have some of the best outcomes in the world.
The amazing doctors at Children’s Minnesota helped me live to adulthood. The incredible nurses took the most wonderful care of me and always lifted my spirits when I was down, often administering the best medicine, laughter. The respiratory therapists always made my treatments tolerable when I wasn’t feeling well. Then there were the security guards who gently reminded me that rollerblading was not allowed in the tunnel. The staff was so comforting during my extended stays. It’s always nice when I stop in to see them or when one of them reaches out to me on social media just to say hello. I tell everyone Children’s [Minnesota] is the best place for kids and younger people!
I couldn’t be happier being a part of the amazing milestone celebration. I thank you all that have taken care of me and congratulate Children’s Minnesota for 100 years of excellent service!
Celebrating a century of care: Children’s Minnesota turns 100
Children’s Minnesota has been here for 100 years. And it’s all because of you: the people who bring your kids here, the ones who work here, the partners who refer their young patients for specialty treatment, the donors who support us, and the community who rallies around the families in our hospitals. Join us in celebrating a century of care — and a bright, healthy future for Minnesota kids.