In October 2008, I found out that I have the thrombophilia known as Antithrombin (AT) Deficiency, and I learned it the hard way. I noticed that I felt slightly short of breath for two days, so I made an appointment with a cardiologist at the Minneapolis Heart Institute. I was unable to keep that appointment, as I awakened the next morning because I could not breathe, and could barely make it to a chair! My wife called 911 and paramedics arrived within moments. I was treated for a heart attack in the ambulance, even though I had no chest pain. Quietly, I focused intently on taking each breath. I have been through a lot in 77 years, but this was the first time I thought I might die.
I was very fortunate that a well-informed doctor in the emergency room (ER) recognized what was happening. A scan found large blood clots in both of my lungs. Clots can travel to the lungs from the leg, and become a pulmonary embolism (PE) or lung clot. The blockage that is created by the clot causes very low blood oxygen that led to my frightening and terrible sensation of being unable to catch my breath. Breathlessness was my only symptom, which could have been misinterpreted, or diagnosed as something else. Autopsies show that half of PEs are undiagnosed and may only be found after death, and they are fatal in about 1 out of every 3 people.
Within an hour of my arrival in the ER, an IVC (inferior vena cava) filter was inserted to capture any clots in my lower body from traveling to my lungs. The inferior vena cava is the large vein that returns blood to the lungs to pick up more oxygen. Ultrasound scans later found a number of deep vein thromboses or DVTs (blood clots) in my left leg. One doctor said, “You could not have survived if you had another clot.” It took 7 days to stabilize my clotting time (INR) with “blood thinners” before I was discharged from the hospital. I was told that I would be treated with Coumadin® (“blood thinner”) for six months.
The IVC filter was removed after 40 days. There were still blood clots in my leg, even after six months of treatment with Coumadin®! A hematologist at Mayo Clinic found that I had a rare hereditary AT Deficiency that put me at higher risk for clotting. It carries an autosomal dominant trait, which means that my children have a 50% chance of carrying it. Therefore, my children and grandchildren are being tested to see whether they have a hereditary AT Deficiency. AT Deficiency may be acquired as well as inherited. I learned more about AT Deficiency by reading the AT Deficiency In-Depth Guide for Patients and healthcare Providers on this website.
This experience with a blood clot and a thrombophilia like AT Deficiency removed my previous “blissful ignorance,” yet I realize it is important to move forward and manage this situation. Even though I was also diagnosed with what was called an “incidental blood clot” in my calf in 1996 and a coagulation study at that time found a “slightly low Antithrombin III abnormality,” I realize now that no blood clot or clotting disorder is insignificant. None of my doctors then raised a warning flag or told me its significance. As a result, I almost died twelve years later. I am taking Coumadin® on an ongoing basis to prevent clots. I now know the risks associated with ongoing anti-coagulation therapy; but I needed to learn those risks. I continue to take walks, but do everything I can to avoid falls or hit my head. The NBCA web site was a unique help for me to learn what I am up against, and appreciate that it can provide essential information on blood clotting risk to many.
These are my suggestions based on my experience that I hope can help others:
- Get help right away if you have unusual or unexpected shortness of breath.
- Be vigilant and persistent in seeking the help you need.
- If you are diagnosed with a blood clot, ask your doctor what is (or are) the most likely reason(s), and what actions you can take to prevent recurrence.
- Use the NBCA web site and related sources to learn all you can about clotting, and how to minimize your risk.