“…You have a mass in your heart — most likely a cancerous tumor — and we will need to do open heart surgery. I am away for two weeks starting tomorrow, so call and make an appointment to see me when I get back from vacation.”
This was a message left on my voicemail at 4:58 p.m. on a Friday evening. It was my cardiologist reporting on my recent echocardiogram, a test I had to do every six months. I had congestive heart failure at age 25, due to a lifetime of severe anemia caused by thalassemia, the genetic blood disorder I was diagnosed with at 14 months old. Beta thalassemia causes reduced production of hemoglobin, which results in a lack of oxygen in cells throughout the body. For me, the biggest hurdles are the secondary diseases and conditions that are a result of thalassemia — especially for me, because I didn’t receive the proper treatment as a child, which is routine blood transfusions every two to four weeks.
In a frantic state, I tried desperately to reach the doctor, but my efforts were fruitless. He was probably already on a plane to Bermuda. How insensitive to leave me such a message right before he went away!
I called my hematologist, and thankfully he was well-connected. In a week’s time, I had an appointment with a new cardiologist at a renowned hospital. He assured me that I would be OK and that we were in this together. He was positive this was not cancerous, and most likely, due to my history of thalassemia and splenectomy, this was a blood clot.
A wave of relief washed over me until he told me what the treatment was — heparin shots twice a day for two years. “They will be painful,” he kindly warned, “and you will always have to be on blood thinners.”
“Does this mean I can’t ride roller coasters?” I said. “Hey, I have priorities!” We laughed.
Thus began the painful shots of heparin morning and night.
At the time, I was in a new relationship — another thing that was never supposed to happen. Why? Well to start, upon my diagnosis my parents were told I would never live past the age of 13 years. To reach adulthood was a feat unto itself. I was also severely wounded by years of being made fun of as a child, and by body image issues. I had a scar from my sternum past my belly button from a splenectomy at 10 years old. Plus, I was a blood recipient, and despite the fact that we have a safe blood supply in the United States, let’s face it — there are stigmas. I didn’t think I would ever find a man who would accept me and all my “thalassemic flaws.” My thoughts since age 30 have drastically improved, but it has taken decades of therapy and love.
When I started my blood clot treatment, I had just told my boyfriend, Matt, that “thal” was no big deal. It really is a big deal, but I was trained at a young age to think thal was a burden on my family and I needed to carry it myself. I conveyed the message that thalassemia was manageable, and aside from the basics (transfusions every three weeks, a regimen of chelation infusion therapy 12 to 15 hours a day, being followed by a team of doctors for primary care, hematology, cardiology, endocrinology, gastroenterology, pain and more, and taking handfuls of pills daily), I rarely had “events.” Well, I guess I had some explaining to do…
Matt took the news of my clot like a champion. From the moment I met him and told him about thalassemia on our third date he wholeheartedly accepted me, scars and all. He did not point fingers (he never said, “But you said your chronic illness was no big deal”); he did not make it about himself (“Ouch…more needles. I’m scared…I don’t do needles!”), and instead showed care and compassion. I tried to push him away, but he stuck around.
After my first incredibly painful self-administered shot — it stung so bad, it made my eyes tear up — I decided to dedicate the treatment to him. I was in love. And if I had to get rid of this clot to stay alive, well, I wanted to stay alive for him. He made my struggles worth it, which was new territory for me. Before I met Matt, I always suffered in silence, and now I no longer had to. I never thought I would find love in my life because of my illness. So if I was going to get through this, it would be for him.
Within weeks, my abdomen was all shades of black, blue, yellow and green. I reserved my stomach for the shots so I could use my thighs for the infusions I had to do 15 hours a day. Looking and feeling my best was out the window — but Matt loved me just the same.
That is how I learned what true love is. It does not mean I have to be perfect. It is someone who loves me despite being black and blue. Despite having a clot in my heart. And despite having a chronic illness. It is loving someone so much that I could dedicate a seriously painful treatment to him in order to see light at the end of the tunnel. Before I met Matt, there was no light at the end of the tunnel — just one long, dark tunnel. There were many times during my younger years I did not want to go on with treatment, but somewhere deep within, I guess I had a seed of hope that someday I would find a reason to live. Now that I had a reason, every painful shot was tolerable. He was incredibly supportive; his compassion was palpable. He would distract me during my injections with funny jokes and antics. He was a salve to the sting.
We got engaged three months after I began my blood clot treatment and were married a week after I took my last shot. But every single shot was worth it. My clot went away; I had a new, incredible cardiologist (I never went back to my first cardiologist, and guess what? He never even reached out to me to follow up!); and a husband who I knew loved me and every single bruise on my body.