When Nicole Jahns was just five months old, her parents – and her doctors – knew something was wrong. She wasn't gaining weight like a five-month-old should, and she wasn't, as her doctors put it, "thriving." They soon discovered why. Nicole had cystic fibrosis, an inherited disorder that affects the cells that produce mucus, sweat and digestive juices causing them to become thick and sticky rather than thin and slippery, as they should be. It's a life-threatening condition that can cause severe damage to a person's digestive system and lungs.
Though it's been challenging at times, Nicole has never allowed her condition to stop her from living her life, and she dedicated herself to caring for others as a nurse at Mayo Clinic in Rochester. In late 2012, Nicole’s life was interrupted for six months while she waited for a double lung transplant. That transplant finally came in early May 2013, but getting there wasn't easy.
For starters, in a story in a local newspaper, one of Nicole's pulmonary physicians at Mayo Clinic, Mark Wylam, M.D., said that to simply stay on the transplant list, Nicole couldn't leave the hospital during her six-month wait for a transplant. Not even to simply have lunch or a cup of coffee with family or friends. "It takes a special person to get through all of that," Dr. Wylam told the newspaper. "She did remarkably well."
Nicole was hospitalized in November 2012, and to help pass all those months of waiting, she says she spent most of her days talking with visitors and watching recorded videotapes of her young son Aidan's football games. And since she couldn't work, Nicole would take regular "walking trips" to see her nursing colleagues in the Emergency Department at Mayo Clinic Hospital – Rochester, Saint Marys Campus. "I was the one in pajamas walking around," Nicole says with a smile.
During those trips to the Emergency Department, Nicole says her co-workers always spoke to her openly and honestly about what she should expect with her transplant. "They never talked down to me," she says. "They talked at my level."
Nicole says she appreciated the "extra steps" that Mayo Clinic, as a whole, took to care of her during her extended stay in the hospital. "The care that I received at Mayo was above and beyond anything I could ever have imagined," she says. "From the nurses in the ED, who I love like a second family, to the nurses who had me as a patient for almost seven months. The care they gave me not only saved my life, but also my spirit."
Today, Nicole is back to work as a member of the Emergency Room staff, a position she says brings her great joy each and every day. "I love to know that what I do matters," she says. "I help make a difference to someone who is hurt and needs help."
And she says she'll never forget who helped make it possible for her to continue doing her life's work. "I am forever thankful for my donor family," she says. "My health is doing well – no signs of rejection and my lung function has been stable. Life is perfect!"
For others who may be where Nicole was – lying in a hospital bed waiting for a chance at having their own transplant – she says the most important thing is to never give up hope. "Hope keeps you going," she says. "Have faith in yourself and your transplant team."
And when the day finally comes, Nicole says you can take great comfort in knowing that you'll receive the best possible treatment and care at Mayo Clinic. "My transplant team has been wonderful," she says. "Any questions that I have are answered right away, and the whole team is very knowledgeable and reassuring. You're not a number here, but a patient who's treated like family."
So happy for you Nicole. Your story caught my eye because I have a 32 year old son with CF. I was originally surfing the Mayo Clinic website to find out about minimally invasive heart valve repair/replacement stories and did happen upon one. I have 2+ tricuspid regurgitation, and trace mitral and pulmonic valve regurgitation. I have been a nurse for 25 years so I know things can worsen over time. I'm pretty sure this has been going on for a long time or even congenitally. That being said, I always thought my shortness of breath was due to asthma but my pulmonologist in Boston says I have mild asthma/copd.