After more than 30 years in IT, Tom Sibert gets to dive into one of his favorite hobbies—reading. From 18th and 19th-century U.S. history to science, Sibert is always looking to learn something new. “I tried very hard to understand astrophysics, and I just can’t do it,” he laughed. “But if I see one in the library, I still pick it up.”
He also enjoys spending more time with his wife and family, especially his grandson. “He’s 12 years old and he’s playing soccer,” Tom said. “It’s fun watching him grow up.” Before his illness, Tom loved to golf. He even fulfilled a lifelong dream by playing a round at St. Andrews in Scotland in 2017 with a group of close friends. But his favorite getaway was in the mountains, Lake Tahoe in particular. “You can gamble at the casino,” he said, “and then in half an hour you can be in the wilderness. That was appealing to me.” Like most retirees, Tom had hoped he’d enjoy many more years of golfing and discovering new mountainsides to explore.
Unfortunately, Tom’s plans have been put on hold for a while. It all started back in 2015 after a routine cardiologist appointment. Everything seemed okay after his check-up, but on his way out, the nurse practitioner caught up with Tom and told him he noticed something unusual with his bloodwork.“He came running out and said, ‘I forgot, I need to tell you. You’ve been anemic for at least four years. You need to see a hematologist,’” Tom recalled. “My primary care physician never recognized that.”
So, Tom went to see a hematologist, where he learned that he had multiple myeloma. However, the myeloma was caught early—almost too early. “Everything you hear about cancer is ‘catch it early,’” he said. “Multiple myeloma is the exception.” Tom would have to wait a couple more years until the cancer progressed to the point it would be treated. Aside from some mild tiredness, he was relatively symptom-free. That all changed after several years of treatment. He started feeling extremely exhausted, and his anemia was worse, too.
“I was fatigued all the time,” Tom said. “It was like I’d run as far as I could and stopped, but even hours later, after my breathing and heart rate returned to normal, I still felt like I had just finished running. It was constant.”
Tom knew something was up because even after his myeloma was under control, the fatigue never went away. In fact, it worsened, and his anemia became even more severe. Doctors initially diagnosed Tom with aplastic anemia (AA), a disease in which the patient's immune system attacks the bone marrow. One of the treatments is blood transfusions to help manage the extreme anemia AA causes.
But Tom was hoping for a more long-lasting solution for his AA, and for a while, he found it. Doctors gave him an Antithymocyte Globulin IV infusion (ATG), which uses antibodies to calm the immune system and stimulate the bone marrow to make more blood cells. All told, Tom’s treatment involved four days of six-hour infusions during a full week in the hospital. There were also side effects, and in Tom’s case, the ATG caused heart arrhythmias. Still, the risks were worth it.
“I went eight weeks without needing a transfusion,” Tom said. “But then I went right back to where I was.” When the ATG stopped working, Tom’s doctors wanted to take another bone marrow sample to see if there was something also going on. It turns out, there was. “From that biopsy, they decided that I had myelodysplastic syndrome (MDS).”
His doctor decided to treat the MDS with an infusion-based drug called imetelstat every 28 days. Imetelstat finds and stops abnormal blood cells from growing in the bone marrow so that the marrow produces healthier blood cells. Tom is currently in the middle of treatment with imetelstat, which can take 3 to 6 months to have an effect. Despite the treatment, he still needed weekly blood transfusions.
Without the transfusions, Tom’s hemoglobin could hit 5.6. For perspective, the normal low-end hemoglobin level for an adult male is 13.4. Hemoglobin is a protein in your blood that delivers the oxygen your body needs to function. If your hemoglobin count is low, you’ll start feeling weak, tired, or experience trouble breathing.
“Right now, [my hemoglobin levels] are averaging in the sevens,” he said. “It takes those transfusions to keep it in the sevens.” That’s a far cry from 13.4, but Tom is still grateful for his transfusions. “Lately, I’m getting two units—one on Monday and one on Thursday,” he said. “They’re keeping me alive.”
Before his health issues, Tom was a blood donor. And now, as a recipient, Tom is acutely aware of the impact of blood donation. “I feel guilty about my transfusions,” he said. “It’s keeping me alive, but somebody’s donating it, and I’m getting so much of it.”
That’s one of the reasons Tom wanted to share his story. None of us knows when the roles reverse and we’re the ones who need saving. Because from Tom’s perspective, we’re all in this together. “This planet is all we've got, and each other is all we've got,” Tom said. “If you can find two hours or however long blood donation takes, you can save lives.”
People need people, make a difference in someone’s life by donating blood.
We must rely on each other for the gift of blood, and patients in your community rely on the generosity of Versiti’s blood donors to help. Please consider scheduling an appointment to donate. If this is your first time, donating blood is quick, easy and relatively painless. And, it is a great way to give back and help patients in your community.