Life can change in an instant with a startling medical diagnosis or unforeseen injury. Those afflicted often find themselves in a maze of appointments, tests, surgeries and treatments. It can be a challenging process for both the patient and their loved ones, but it’s a time when it’s critical to become proactive in your health care.
David and Carole Harber know firsthand the challenge of navigating an unexpected illness and a complex plan of care. In 2011, after being referred to the Mayo Clinic in Rochester, Minn., David Harber was diagnosed with amyloidosis, a rare and potentially fatal disease estimated to affect about eight out of one million people a year. Amyloidosis is caused by the buildup of abnormal protein (amyloid) in body tissues or organs. The disease can affect any organ, including the heart, kidneys, liver, spleen, nervous system and gastrointestinal tract.
There are several different types of amyloidosis with varying treatment plans. Harber’s disease was identified as primary AL (amyloid light-chain) amyloidosis, and his recommended treatment was an autologous stem cell transplant to be performed at the Mayo Clinic. The procedure involves the collection of the patient’s own stem cells followed by high doses of chemotherapy and reinfusion of the previously collected stem cells. Patients then experience a period of extreme immune suppression while they wait for their stem cells to engraft.
A lifelong athlete and avid cyclist, Harber’s physical and mental discipline served him well in his battle against this illness. Carole Harber, his wife and caregiver, supported him each step of the way.
In the beginning, the education process can be overwhelming, Carole Harber says, but she believes it’s essential for patients to learn as much as they can about their illness and treatment plans. She also encourages others to seek a second opinion, if needed, and to be willing to travel for care.
“If you’re not 100 percent comfortable with your diagnosis or the recommended treatment plan, don’t hesitate to seek a second opinion. Most doctors encourage it, and patients shouldn’t feel like it’s inappropriate or disrespectful,” she says. “Patients who are diagnosed with rare diseases or whose local physicians are unable to provide definitive diagnoses should consider traveling to a center of excellence for evaluation and treatment, if at all possible.”
For the Harbers, that meant renting an apartment near the Mayo Clinic for their anticipated six-week stay to complete the transplant and allow time for Harber’s immune system to sufficiently recover for him to safely travel home.
“It’s certainly not the easiest path,” says Harber. “Moving to Minnesota in the winter for treatment was not exactly our idea of a good time, but we both knew that it was my best chance for long-term survival. We were isolated, for my safety, and completely out of our normal routine, but I’m glad now that we did it.”
Through their experience, the Harbers have learned the importance of staying organized, the power of support groups and the benefits of staying active.
“We went to each of David’s doctor’s appointments having done our homework and with a prepared list of questions,” says Carole Harber. “We believe that most physicians want to fully answer their patients’ questions, but that it’s important to be prepared. We have multiple binders with test results, printed clinic notes and our own notes taken during appointments. Staying organized is crucial because of the sheer volume of information in complex cases. This is equally important when dealing with insurance claims.”
While researching the disease, the Harbers discovered the Amyloidosis Support Group (ASG). Through their participation in the organization, they have connected with other patients and had the opportunity to learn from experts in the field of amyloidosis treatment and research.
“Involvement in a support group can be an important part of any patient’s journey,” says Harber. “There is an instant bond with other patients, which is very real but hard to explain.”
After undergoing the stem cell transplant, Harber completed six months of additional chemotherapy in Tulsa. In May 2012, after the first cycle of chemo, he received the uplifting news that he was officially in remission; he remains in remission today.
Throughout his treatment process, Harber continued to ride and race with his 36P cycling team, even completing a 100-mile ride eight days before leaving for the Mayo Clinic. He also set up a remote office while in Rochester to continue working.
“We believe that being as active as possible, while remaining compliant with your doctor’s orders, plays a big role in having a successful outcome,” says Carole Harber. “For David, getting back on his bike and back to his company were huge parts of his recovery, which helped him mentally, as well as physically.”