Her 63 surgeries, over 100 blood transfusions, and more than 10 rare medical conditions don’t stop Joanna from being optimistic and grateful for life.
When Joanna was just 15 years old, doctors discovered her brain was herniated at the base of her skull, which caused a large cyst in her spinal cord. By age 18, she had been diagnosed with another four conditions and had already undergone 12 brain and spine surgeries. This was the start of Joanna’s long medical journey – one that is still ongoing today at the age of 33.
While each of Joanna’s conditions has a different set of symptoms, they all affect each other, causing each one to behave differently than it would on its own. Her physicians describe it as the perfect storm—you can never just treat one condition, and you have to factor in how the other conditions will react before deciding on treatment.
One of Joanna’s conditions is a buildup of excess cerebrospinal fluid in her brain. For years, Joanna has had a shunt, which is a medical device implanted in her brain to relieve pressure by diverting the excess fluid to her heart. Shunts generally last anywhere from several years to a lifetime, but Joanna’s shunt required replacement every 3 to 6 months, and each brain surgery to replace it got increasingly difficult and dangerous. In the spring of 2012, Joanna’s care team in Atlanta contacted Mayo Clinic for help determining why her shunt was failing much more than normal.
Joanna’s first trip to Mayo Clinic in April 2012 included testing and consultations with nine different departments. Joanna finally received an answer after a visit to the Hematology Department. After many tests, she was diagnosed with an autoimmune blood-clotting disorder that was causing tiny blood clots to form around the tip of her shunt, which stopped it from being able to drain properly and led to failure. No one had ever seen this condition cause this kind of complication before, but her team at Mayo Clinic decided to begin treatment in the hopes that it would help. There is no cure for Joanna’s condition, but it can be treated with blood thinners that make it hard for the body to develop blood clots. Joanna has been giving herself anticoagulant injections every day since her diagnosis.
Facing emergency brain surgery every few months, Joanna found it difficult to live day to day and plan for the future. However, the diagnosis that she received at Mayo Clinic saved and changed her life. Her shunt has continued working since she began treatments, and this is the longest she has ever gone without needing brain surgery to replace the shunt.
Joanna had a couple stable and wonderful years following that diagnosis, despite the chronic conditions that she continued to manage. That changed suddenly in 2015 when Joanna was hit by a large delivery truck. This incident resulted in injuries that required her to have emergency brain surgery, as well as a shoulder injury that eventually progressed to having almost no use of her right arm. She returned to Mayo Clinic earlier this year and underwent a major surgery for her shoulder with the Orthopedic Department, which included a triple-tendon transfer and a scapuloplexy. She spent the four months following the operation immobilized in an upper-body brace, but she is happy to report that she now has more use of her right arm than she has had since the accident.
While Joanna recovers from her surgeries and lives with many chronic symptoms, she remains positive and optimistic about life. She is thankful for her wonderful support system and the dedicated support of her health care team.
“I am especially grateful for the innovative and advanced diagnosis that I have received, along with Mayo Clinic’s expertise in treating rare and complicated conditions. I do not believe that I would still be here without the help of Mayo Clinic” said Joanna.
Joanna receives frequent blood transfusions, so she is able to celebrate the holidays with her family. Because of this, her family members make a point to donate at the Mayo Clinic Blood Donor Center whenever they are in Rochester for her checkups or surgeries. In fact, in March of this year when Joanna was a patient at Saint Marys, her parents and husband all donated on the exact same day she received a blood transfusion. They know firsthand the importance of blood donation, as it has helped to save Joanna’s life more than once.
To read more stories like this, visit the Mayo Clinic Blood Donor Program’s Blog Page.