Blood Donation: Living a normal life depends on donors
1/21/2019 by Katy Maeder, Donor Services
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.
But despite her 63 surgeries, over 100 blood transfusions, and more than 10 rare medical conditions — Joanna remains optimistic and grateful for life.
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 treat just 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, she has had a shunt, which is a medical device implanted in her brain to relieve pressure by diverting the excess fluid into her heart. Shunts generally last anywhere from several years to a lifetime, but Joanna's shunt required replacement every three to six 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.
Finding an answer
Joanna's first trip to Mayo in April 2012 included testing and consultations with nine different departments. She 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 complication before, but her team at Mayo decided to begin treatment in hopes 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. She 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 she received at Mayo Clinic saved and changed her life. Her shunt has continued working since she began treatments; this is the longest she's every gone without needing brain surgery to replace it.
Accident deals her a setback
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 she was hit by a large delivery truck. This accident resulted in injuries that required emergency brain surgery and a shoulder injury that left her with almost no use of her right arm.
Joanna returned to Mayo 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 don't believe I would still be here without the help of Mayo Clinic," she says.
Joanna receives frequent blood transfusions, so she is able to spend more time and special occasions 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. They know firsthand that blood donation has helped save Joanna's life more than once.
To read more stories like this, visit the Mayo Clinic Blood Donor Program's Blog Page.
Here are ways you can be involved in blood donation:
- Donate blood. For more information about donating blood in Rochester, call (507) 284-4475, send an email to email@example.com, or visit Mayo's blood donation webpage. Blood donation locations in Rochester are:
- Hilton Building, First Floor
Monday-Friday, 6 a.m. to 4:30 p.m. (507) 284-4475
- Saint Mary's Campus - Joseph Building Main Floor, Room M-86
Monday-Thursday, 7:30 a.m. to 3:45 p.m.
Friday, 6:30 a.m. to 3:30 p.m.(507) 255-4359
- Hilton Building, First Floor
- Host a blood drive. To make it convenient for you to give blood, Mayo Clinic Blood Donor Center offers mobile blood drives at locations around Olmsted County. Consider hosting a blood drive at your business, church or other site. Contact the Blood Donor Center to discuss.
- Lead a blood donor challenge. Challenge your family, friends, colleagues or groups in your community to donate blood. These friendly competitions are a fun way to encourage others to donate — and save lives in the process. For the challenge, team members simply check in at one of the donation locations with their team name, which ensures the donation is counted. When the challenge ends, the group with the highest percentage participation wins bragging rights. Are you ready to start a challenge?