Anya Crum was diagnosed with Cystic Fibrosis (CF) when she was three months old. Throughout her life, she has needed close medical supervision. During her childhood and adolescence, she went through a 30 minute respiratory therapy three times a day. The treatment consisted of a mist form of medication inhaled into the lungs. Following the treatment, her parents would cup their hands and pound (clap) her on the back and chest in order to loosen and clear secretions from her lungs.
Anya’s CF also affected the ability of her body to break down and absorb food, thus she has taken enzymes before each meal and snack for her entire life. In addition to her parents’ close monitoring, Anya was seen at the Children’s Hospital in Columbus, OH every three months, beginning as an infant and continuing into early adulthood.
Throughout most of her life, Anya was very active and healthy and led a normal existence. In high school, she was able to participate in cheerleading and track, and in college, she was a member of the sorority Alpha Xi Delta. After college, she relocated to Virginia to pursue a career in education.
In 2002, however, her health deteriorated rapidly. Anya was hospitalized for the first time since she was 6 months old. Over the next few years, she found herself in and out of the hospital nearly every 6 months due to pneumonia and other lung infections.
In 2004, because of the severity of the disease and its progressive nature, she was evaluated then placed on the lung transplant list at the University of Virginia. After waiting nearly 2 years on UVA’s list, her local pulmonologist decided to have her re-evaluated and placed on the waiting list at Inova Fairfax Hospital in Fairfax, VA. Anya remained on the list at Fairfax for nearly 1 ½ years.
On June 24, 2008, the call finally came that lungs were available from an anonymous donor. After 35 days in the hospital, Anya went home to Chantilly, VA with new lungs.
In the fall of 2010, she participated in the US Transplant Olympics in Madison, Wisconsin. She won silver in the 100 meter dash. A picture of her, with her medal, hangs inside the transplant clinic at Inova Fairfax Hospital still today.
In March of 2012, Anya got engaged atop Twin Peaks in San Francisco, CA to the man of her dreams, Mike, (also the creator of this blog and the editor of this post), who’s also handsome, charming, smart … and an all around great guy. 🙂 He’s also very fun-loving and awesome to be around.
At that time, Anya was running an average of four miles every other day and going to the gym frequently. In March of 2012, Anya noticed that she wasn’t able to run as far or as much as she had been running. After several months of declining lung function, numerous bronchoscopies, IV antibiotics, and a lengthy hospitalization for pneumonia, the Fairfax transplant team officially diagnosed her with chronic rejection, also known as bronchiolitis obliterans syndrome (BOS), a common condition with lung transplant patients.
Feeling discouraged and frustrated, we decided to research possible treatments for BOS. Although Fairfax would not treat the chronic rejection, we found that Duke University Medical Center’s lung transplant program did. After getting a referral from her pulmonologist at Fairfax, we made the trek to Duke in the late summer of 2012 with the hopes of being treated for BOS. Instead, we ended up in a week-long evaluation for re-transplant. it was determined that Anya was too early for re-transplant at the time and ineligible for BOS treatment because of recurrent lung infections. The Duke team suggested we return to see them when Anya’s lung function was below 30%, and she was on oxygen.
Thanks to the good team at Fairfax, Anya was able to maintain her lung function (around 38%) for well over a year. Unfortunately, another bout of pneumonia and a 5 day hospitalization in November 2013 left Anya and Fairfax doctors determining that the workup for re-transplant was at hand. Thankfully, her doctors at Duke University Medical Center agreed.
Currently, Anya is living in Chantilly, VA with her fiance and two dogs, Rudy and Remy. Not quite on the wait list for a lung transplant yet but working her way through Duke’s extensive evaluation to be listed.
Update August 28, 2014
After two months in the ICU at Inova Fairfax Hospital, Anya was flown to Houston Methodist via Air Ambulance. She spent roughly 2 weeks being evaluated by the transplant team. Spent another few weeks in the ICU due to a punctured lung, then she was transferred to Kindred Hospital for rehabilitation while waiting to be listed for a second transplant.
Update November 20, 2014
After waiting nearly 3 months, Anya was officially listed for a 2nd transplant on November 20, 2014 at Houston Methodist Hospital in Texas.
Update December 31, 2014
Anya was transplanted on New Year’s Eve. Surgery took nearly 6 hours.
Update January 31, 2015
Anya spent one month in the ICU due to complications of the 2nd lung transplant. Many bronchs were performed and a pulmonary arterial stent was placed inside of her artery to give her more blood flow to the lungs. She was released from the ICU on this day.
Update February 5, 2015
After spending roughly a week “on the floor” (post-transplant recovery floor), Anya was released from the hospital. She spent exactly 172 days in the hospital.
Update March 31, 2015
Ninety days post transplant, Anya’s lung function continues to improve. Currently, Anya is still in Houston waiting to be officially released to go home by the transplant team.