The Diagnosis
In 2002, 41-year-old Eric Hodies was a devoted triathlete, training for his 21st Virginia Beach Sandman Triathlon. He had competed in the event every year since its inception, and he was looking forward to another great race. But in the months leading up to the event, he noticed that he was getting slower and slower, despite the fact that he was increasing the intensity of his workouts. Ever attune to the signals his body was sending him, he went to a doctor. He was initially diagnosed with asthma, but further tests revealed that it was aplastic anemia.
“My workouts saved my life,” says Eric. “We were planning to go out on a long hiking trip in the wilderness the day after I was diagnosed, so it was a very good thing that I was working out and found out when I did.”
Treatment Attempts
Eric never questioned why the illness struck him. All of his energy was focused on getting better. Formerly an engineer, he says, “Aplastic anemia is a great disease to have if you’re an engineer. It’s all about numbers and your counts. There are a lot of numbers, so it’s kind of a good thing to be an engineer. We’re problem solvers.”
He’s also a strong proponent of self-education. Within hours of his diagnosis, he had read just about everything he could find about aplastic anemia on the internet, including information from AA&MDSIF and a clinical trial website. He says, “even if you don’t understand every little detail, you can use common sense to figure out the gist of things.”
Unfortunately, the primary treatment for aplastic anemia, ATG (anti-thymocyte globulin) was ineffective for Eric. He then tried high-dose cytoxan chemotherapy at the Johns Hopkins Hospital. This treatment also proved ineffective, though it took a year of waiting to know for sure that he had not responded to it.
Because neither treatment resulted in remission, Eric has had low blood counts for more than eight years. He has relied on transfusions of more than 800 units of blood in that time, getting a transfusion every 8-10 days. He describes his situation as a unique case – he’s just gone on living with aplastic anemia. Over time, his body has adapted to low blood counts, and he gets a transfusion whenever his hemoglobin drops to 8 (half of normal). As a result, he always feels tired and naps regularly.
Life with Aplastic Anemia
It has been an adjustment. Before, he’d work out every single day. He says of that time, “I couldn’t even imagine being sick. I never got sick. If you had asked me the day before I was diagnosed, I thought I was going to live to 1000. When I went in, I thought they were just going to wave a wand and I’d be back on my feet in no time.”
Eric has also stopped working. Though his boss was really fantastic about the situation, Eric felt he couldn’t keep his job with the frequent doctor appointments and transfusions, not to mention the general fatigue. He was led to believe that he didn’t have much time left, and he didn’t want to spend his remaining days at work. Nonetheless, leaving his career was not an easy decision. He remembers crying, partially because leaving work seemed to represent going home to die.
There are other aspects of his life that have been affected as well: “There’s not been a day when my wife and I haven’t talked about the disease in eight years. We always talk about the next appointment, getting blood, the [Hickman] catheter; there’s always a lot to discuss. It affects us, but not a lot. I’ve grown to accept it.”
Living Well
Despite numerous setbacks, including a hemorrhagic stroke in 2005 and another life-threatening situation in which his catheter broke, Eric has never given up. He believes in three primary approaches to staying well: 1) a positive attitude, 2) daily exercise, and 3) nutrition. “I don’t believe in a magic pill,” he says. “We eat really healthy food. It’s not the whole answer, but it’s one part of the puzzle.”
He also relies on the help of his wife and his medical team. He says, “Nurses at the hospital are my friends. I know them, we talk, and they know me. I know half the people in the hospital. My doctor and I see eye-to-eye. I’ve been very lucky, but I’ve also worked very hard to assemble a great team.”
Challenges
The hardest part for Eric in dealing with the medical profession has been insurance issues. His medical bills in the first year came to nearly $1 million including hospitalizations, renting an apartment during his treatment at Johns Hopkins, blood transfusions, and chelation therapy. He was initially denied one expensive chelator that was designed specifically for people with similar histories of extensive transfusions. His ferritin (iron level) was at 5700 at that point. Without treatment, that level of iron could have caused organ damage. His doctor was finally able to get it approved by talking to the insurance company doctor.
“My experience is that if you call up the insurance company and talk about what they’re denying, and if you fight it, they’ll say yes. But they deny everything initially. I call them right away. That’s part of my job now. My job is to stay healthy, and keeping insurance straight is part of that.”
Advice for Survival
Eric recommends that anyone who is seriously ill needs to surround themselves with the best medical professionals they can. He says to never give up until you find the right people: “You have to be happy with your team. You have to be a little aggressive. You have to be willing to find another doctor [if you don’t agree with the first one]. You have to be your own advocate. If you’re not happy, you just have to keep going.” Eric notes that every doctor is offering the right advice to somebody, so it’s just a matter of being patient as you find the right one for you. He says, “This is my body and I have to take responsibility.”
Part of finding the right team includes educating yourself. Eric was the one who found the treatments he underwent. “You need to get on-line – there’s tons of great information out there. Start at the AA&MDSIF website. I even e-mail doctors who write articles in journals. Get two or three opinions right off the bat and discuss them with someone who has good ears. Aplastic anemia is not a clear case. There are a lot of decisions and a lot of different treatments to choose from. Learn about yourself.”
Winning the Race
Exercise has Eric’s saved life, along with a powerfully positive attitude and never-waning desire to continue his race all the way to the finish. With the help of a team, Eric competed in and finished the 21st Sandman Triathlon, a true testament to his determination and positive attitude. He is practically brimming with positive affirmations. He says, “I’ve always appreciated life, but more so now.”
These days, he’s running the race of his life, and despite the fantastic hurtles in his way, he’s winning.
Update: It appears Eric has won his battle. Since this article was written, he has gone into spontaneous remission without any treatments or medications. He is now transfusion free and his counts continue to increase. Last month, his port catheter was finally removed after nine years.
“My hematologist agrees with calling it a miracle,” says Eric. “I am at work writing a book to document my last ten years of aplastic anemia.”
We can’t wait to read it!
In the summer of 2014 we reached out to Eric again and asked him how he was feeling and how his book was coming along. Eric was happy to give us this update:
First off, I feel terrific and my counts are holding steady. My whites and reds are perfectly normal, but my platelets do lag a bit (around 30k). I am back to running, plus yoga and weight lifting. Also, plenty of hiking and time on the beach. Really anything I want to do.
I published my book in February, 2013, and it has been carried by my local hospital’s gift shop since then. Though far from a best seller, I have received terrific feedback (you can see some comments on amazon). One lady wrote to me to tell me her world turned upside down when her daughter was diagnosed with aplastic anemia, but my book changed her attitude and gave her renewed hope. Because of my book, I have been invited to give talks to cancer support groups, nursing organizations and a drug rehab group. The book has also kept me in touch with current patients, and I do my best to offer advice and support.
More than anything, aplastic anemia taught me that without good health, I have nothing. Health is something not to be taken for granted, and at least a dozen times a day, I give thanks for my good health. Life is good!