Ken Athans: Taking Control and Finding Answers
This article originally appeared in the Fall 2011 issue of "Scleroderma Voice."
Golfing, running, scuba diving, hiking. These are some of 40-year-old Ken Athans Jr.’s favorite hobbies. Just six months ago, his participation was limited in his beloved pursuits because of complications from scleroderma.
In March 2009, Ken was running when he noticed significant breathing troubles and fatigue. The otherwise healthy, active and vibrant U.S. Naval officer from Hawaii initially thought it was a case of walking pneumonia. Like so many other scleroderma patients, he went through rounds and rounds of tests to figure out what the culprit was behind these new symptoms.
A few months later, Ken started to have painful swelling in his hands at night, similar to carpal tunnel syndrome. When more rounds of tests returned normal, his primary care doctor referred him to a rheumatologist. By now, his hands were shiny and the symptoms had spread to his other limbs and the trunk of his body.
At that point, doctors realized Ken had diffuse scleroderma that was rapidly progressing. The shortness of breath that he initially experienced months earlier was caused by inflammation in his lung tissue.
Scared and unsure of what this new diagnosis meant, Ken turned to the internet to learn as much as possible and empower himself as a patient.
With his health deteriorating, Ken learned of the First Scleroderma World Congress held in Florence, Italy, in February 2010. He packed his bags and arranged to attend the event sponsored by the Federation of European Scleroderma Associations, or FESCA, along with the Scleroderma Foundation.
“I knew I needed to educate myself more about scleroderma,” Ken said. “This was a disease that was a mystery to most of the doctors that I had seen. They didn’t know how to treat it. They didn’t have an answer for me. I went to Italy to get answers.”
While in Italy, Ken met some of the leading names in scleroderma care from around the world. He connected with experts such as Philip Clements, M.D., M.P.H., and Elaine Furst, R.N. Dr. Clements is a rheumatologist at UCLA Medical Center in Los Angeles, and a member of the Scleroderma Foundation’s Medical Advisory Board.
“Living in Hawaii, the scleroderma resources are limited. Even with a great rheumatologist at the military hospital, I needed to find a doctor who sees more scleroderma patients and had more experience with this elusive disease.”
Through extreme fatigue and breathing troubles, Ken continued to work at the U.S. Pacific Command Headquarters as a U.S. Naval Officer. He also faced the challenge of being a single parent of two daughters. Ken’s wife passed away in 2006 from inflammatory breast cancer, leaving him the lone caregiver for Alexandra, now 16, and Taylor, 10. Luckily, he was able to rely on the help of extended family to care for the girls and relieve some of the pressures at home.
A New Beginning
One day, he was searching for information about new treatments to help improve his lung involvement and shortness of breath, when he came across information about the ASSIST Trial, a stem cell transplant protocol, under the direction of Richard Burt, M.D. To him, this treatment plan looked less risky than other stem cell procedures currently under trial because it didn’t involve any radiation and included very thorough pre-screening testing.
“I contacted Dr. Burt directly. I went to Chicago in November 2010 and they said I looked like a good candidate for the transplant,” he said. In early 2011, Ken began the process of an autologous stem cell transplant, a procedure that uses a person’s own stem cells, and is under less fire than those using embryonic stem cells.
“In the first phase, they had to collect stem cells from my blood,” he described. “It took about 10 days. I underwent chemotherapy to mobilize the stem cells. It was a very draining process, but the superb care received from the staff at Northwestern throughout the process made a huge difference.”
“The transplant is tiresome. It started out with a high dose of chemo that wipes out your entire immune system and taxes your body,” he recounted. “I was nauseous, my hair fell out and I felt run down. Finally, they reintroduced the stem cells into my body in a short 15-minute process.” Following the transplant, Ken needed to stay in the hospital for about two weeks to allow the stem cells to reconstitute in his immune system.
Two months after his transplant, Ken had noticed significant improvements in his lung function. He was back to running – three miles two to three times per week. At four months, Ken was running five to eight miles, and is currently training for the Honolulu Marathon in December. He also attended the National Patient Education Conference in San Francisco, where he was a speaker on a panel discussion. He also proposed to his girlfriend Wendy under the Golden Gate Bridge during a sunset cruise.
“Wendy is a nurse and has been a tremendous help to me since my diagnosis,” Ken said. “She understands what I am going through.”
Ken has been an inspiration for other patients, taking the initiative to find out as much as possible about scleroderma treatments and the toll the disease can take on a person. He continuously shares his knowledge with others at conferences and by logging in each day to discussion boards such as Inspire.com.
Currently, there is no Scleroderma Foundation-led support group in Hawaii but Ken is working to change that.
“When I was first diagnosed, I couldn’t go see other patients and talk to them. The first time I met another scleroderma patient was in Italy,” he said. “We have been working with doctors on the island [Oahu] to get more information out to people, especially health care professionals. We want people to know that this information is out there, and you can see the potential of the disease and what it can do.”
“It is very important to educate yourself as much as possible. You’re your own best advocate.”
If you would like more information about the Hawaii support group, which is forming soon, please email Ken at firstname.lastname@example.org.
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