Real Stories from People Who Have Experienced Blood Clots – Colleen Dietz
Colleen Dietz had her leg amputated below the knee 8 years ago due to an infection in her toe from methicillin-resistant staphylococcus aureus (MRSA), an infection resistant to antibiotics and difficult to treat. She has continued to have recurrent MRSA infections; each time, she has to have a peripherally inserted central catheter (PICC) line inserted in her arm to administer her antibiotics.
The last time she had a PICC line inserted (August 2018), something just didn’t feel right. She told her infectious disease doctors that the PICC line felt as if it was stabbing her in the left side of her chest. She could not lay flat, especially on her left side, as her heart would beat rapidly and skip beats. The only way she could sleep was by sitting upright in her office chair. Before this incident, Colleen had never experienced any heart problems. Her PICC line was removed in September 2018, but her symptoms persisted.
Once Colleen arrived at the hospital in Minneapolis, the doctors ran more tests, including a chest X-ray and an electrocardiogram or EKG. She had two big blood clots in her lungs that were stopping the right side of her heart from pumping blood. The doctors gave her medicine to dissolve the blood clots because they were affecting her heart and could permanently damage it. Within 30 seconds of receiving the medicine, she could take a deep breath. They monitored her very closely for 8 hours to make sure she had no complications from the medicine; fortunately, she didn’t.
Colleen now takes medicine to prevent new blood clots from forming. While she hopes this treatment is only temporary, it could be something she has to take for the rest of her life. Because of these two blood clots, Colleen now has a greater chance for developing future blood clots. The lingering worry that she could have another blood clot has perhaps had the biggest impact on her life. “It’s always in the back of your mind: what if it happens again? It’s scary. I had no idea it was there until it was almost too late. It makes me nervous. As a smoker, now when I cough, I sometimes wonder if it’s just ‘smoker’s cough’ or if it could be a blood clot building back up again. And if I have a chest cold, I often wonder if I should stay in bed and rest or go in to see the doctor because it might be a blood clot.”
How is she now?
Today, Colleen is fine. She can do everything she used to do before she developed blood clots in her lungs. However, now she routinely visits her primary care doctor; a heart specialist to make sure her heart is not damaged; and a pulmonologist to make sure her lungs are healthy. The doctors are monitoring two small blood clots in her lungs; they are unsure whether these clots are from a residual blood clot or are newly formed blood clots. For now, she has to continue to take medicine to see if the blood clots will be absorbed by the body and eventually disappear. All tests she’s had show no damage to her heart and that it is strong and normal. Her lungs are clear except for tiny remnants of the two blood clots, which are being monitored closely by her doctors.
Advice to others
When asked what advice she has for others, Colleen had this to say: “If you have a family history of a blood clot, have recently had surgery, or just don’t feel quite right, go see a doctor right away. Don’t just think you have a cold. I’m very lucky to be alive. If your PICC line is hurting you, something’s wrong. Let your doctor know right away. You know your body better than anyone else. Believe in yourself. Trust your instincts. Trust your gut. It could save your life.”
CDC thanks Colleen Dietz for sharing her personal story.