In the winter of 2007, Melissa Hogan woke up with a swollen leg and ankle. As a healthy 24-year-old, she had no idea what was causing the swelling. At her doctor’s office a few days later, an ultrasound confirmed a superficial blood clot in her leg. She was told to take some aspirin and come back if things got worse. Eventually, things did get worse. Melissa has had four recurrent blood clots since that day 13 years ago.
What do you remember about your first clot?
What I vividly remember is that I started taking birth control 5-6 months before the clot developed. My doctor casually mentioned that oral contraception can cause blood clots, but I thought nothing of it. I stopped taking birth control after that first clot.
Did you have any other risk factors for blood clots?
I had a risk factor that I didn’t know about at the time. I have a fraternal twin sister and after returning from a trip to Europe, she started having swelling and leg pain – symptoms similar to the ones I had two years before. She’s a runner and thought she had injured herself on a run. She ignored her symptoms for the longest time but finally went to the doctor. Lo and behold, she had deep vein thrombosis (DVT). A week later, she had trouble breathing and was diagnosed with a pulmonary embolism (PE).
She had a full workup and discovered that she was positive for Factor V Leiden, a genetic condition that increases the risk for blood clots. My PCP recommended that I get tested, and my test also came back positive for Factor V. So, by my late 20s, I knew I had a predisposition to clots.
How did you feel after getting the results from your testing?
I wasn’t overly concerned. My doctor told me to be aware of anything unusual going on in my body, but I was encouraged to stay active and live my life normally. The next few years were uneventful, until I broke my foot in 2014.
Did you need surgery on your foot?
No, but I was in a boot and on crutches for several weeks. After three weeks of being in the boot, my leg blew up like a balloon. It was really painful, like crying-in-the-shower painful.
I had a friend drive me to the hospital and sure enough, there was a large DVT in my right leg. I was referred to a hematologist and took warfarin for 6 months. I made a full recovery, aside from some lagging pain and swelling in my leg.
But my story doesn’t end there. In 2016, I got an IV in my arm for a procedure and my arm started swelling a week later.
Did you fear that you had a clot in your arm?
I knew I had a clot. I get a very distinct feeling when I have a clot. It’s not really pain, but it’s an achy feeling. It’s hard to describe if you haven’t experienced it, but it’s a sensation I’ve had with every clot.
An ultrasound of my arm confirmed a superficial clot and my doctor prescribed heparin injections. A week went by and my arm got worse. A second ultrasound showed that the clot had grown, even though I was on the injections. I switched to fondaparinux injections for 45 days and the clot went away. My hematologist told me that I’d need lifelong anticoagulation if I were to have another clot.
And are you on lifelong anticoagulation now?
Yes. In 2018, I had unexplained pain behind my left ankle. I exercise a lot between running and spin classes, so I thought I just tweaked something. A couple days later, I started getting that achy feeling and went to the emergency room. They didn’t find a clot on my ultrasound – I was so relieved!
The swelling subsided a few days later, so I figured whatever injury I had was healing. I went to a spin class and midway through, it felt like there was a wall in my chest and I just couldn’t get any air past it. I went back to the hospital and a CT scan confirmed PEs in both lungs. I was admitted to the hospital overnight and discharged on apixaban for life.
How have the clots affected your life?
Physically, I still have pain in my right leg and it’s always swollen in a certain spot. Compression stockings help. I wear them for a few hours every day and when I travel on planes.
Mentally and emotionally, the anxiety is the worst part. I think about my clots every day. Whenever I feel something off or weird, I wonder if I have another clot. Before my PE, there was a DVT in my body that didn’t show up on ultrasound or that was too small to see. The doctors couldn’t tell it was there, and that freaks me out.
Since the PE, I’ve been to the ER twice for false alarms – my leg has been swollen and I’ve had pain that I can’t explain. The anxious feeling is always going to be a part of my life.
How do you manage the anxiety, and what advice would you give to other blood clot survivors?
The best way that I can deal with it is to really listen to my body. If I feel that something’s wrong, I’m not afraid to get it checked out. I’d tell anyone else the same thing. You know yourself best. If you think something’s off, call your doctor or go to the emergency room.
Educate yourself, too. The more educated you are about your condition, the more you can advocate for yourself. In my experience, healthcare providers don’t always think of blood clots right away when a healthy person comes in with shortness of breath or other “generic” symptoms. My knowledge about blood clots has helped me in those situations.
I also don’t think women are counseled enough on the risks that come with birth control. Birth control can be dangerous, and women need to be educated about the risks.
Are you back to exercising?
Yes! All of my doctors have told me that being healthy and active really works to my advantage. I was fully recovered from my PE in a month – I feel very lucky.