Sharing my story for National Deep Vein Thrombosis Awareness Month

In the first few days after my double-lung transplant in 2020, I was looking at a hand-held mirror and saw a central venous catheter protruding from the left side of my neck. A large, bulky bandage covered the right side. Little did I know then that the bandage represented something that would change my health and long-term treatment.

My right arm and hand were also grossly swollen. After a few days of my daughter keeping family and friends updated on my recovery, I was feeling ready to get on my phone and catch up with things. Because of the swelling, I picked up the phone with my left hand and placed it in my right. (I’m right-handed.) I tried to tap the screen with my thumb, but no matter how many times I did, my thumb just wouldn’t move enough to do it.

With deep concentration, I tried to apply pressure to the screen, but it just wasn’t enough to wake up the phone. None of my fingers on my right hand could push hard enough to turn it on. Then I noticed that my entire arm was numb.

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Fearing I had permanent damage from the surgery, I notified my medical team, which determined that I had deep vein thrombosis (DVT), or a blood clot, in my internal jugular vein. That’s the primary vein that drains deoxygenated blood from my head, face, and neck and sends it back to my heart. It’s where doctors first attempted to place a central line.

For whatever reason, the attempt wasn’t successful and resulted in a large clot. That caused swelling. I was also diagnosed with a brachial plexus injury because my arms had been raised above my head during the long transplant surgery.

Luckily for me, the nerve injury slowly improved over the next two weeks. Unfortunately, the swelling in my arm took much longer to resolve. I was immediately started on anticoagulants, or blood thinners, which I hoped would be temporary. But the clot area was so large that doctors decided I’d have to remain on a blood thinner indefinitely.

A new pill — and new side effects

I bring all that up because March is National Deep Vein Thrombosis Awareness Month. While I hate to complain about this condition in addition to my already long list of health issues, it’s one that I think could’ve been prevented. I don’t know the exact details, as I was sedated when the line was placed. As a nurse myself, I know how fragile veins can be, and all surgeries have risks. While I’m thankful that something more serious didn’t happen, it’s become an ongoing concern in my healthcare management.

So many other diagnoses accompany or are a result of cystic fibrosis (CF) and are beyond my control. But it’s difficult for me to make peace with this particular one. Now I have to take yet another pill every 12 hours for the rest of my life to thin my blood.

As you know, another medication comes with more side effects. My body is now continuously covered by multiple bruises from the slightest touch to my skin. The side effect list also includes constipation and anemia, two CF issues my body already struggled with before this medication.

Because of the clot, I’ve been robbed of the relaxing comfort of a massage to my neck and shoulders. I wake up every morning with my face swollen and eyelids sagging until I’m up for a few hours and the fluid slowly drains past the DVT in my neck. I pray it doesn’t eventually become a pulmonary embolism.

The bottom line is that I’m tremendously thankful to be alive and breathing well. I make that my focus every single day. But in light of National DVT Awareness Month, I’m sharing my story. As a CF and post-transplant patient, I have so many things to worry about.

Now when I look in the mirror every day, I see a scar on the left side of my neck from the central venous catheter. There’s no scar on the right side, where the bandage was, but I’m instantly reminded of the large clot — which is one more invisible ailment I must silently carry.

I believe that we can grant ourselves permission to acknowledge these unfair additional burdens and feel disgruntled. The next step is focusing on something positive and moving past the negative thoughts. In the end, I realize it’s a small price to pay for the ability to breathe again and for the sacrifice of my organ donor.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.