Self Advocacy

Introduction

When impacted by a blood clot, it’s crucial to practice self advocacy to ensure that you receive the best care. It can be tremendously difficult to navigate today’s modern healthcare system, if for no other reason than it can be so foreign and, at times, very frightening if, for example, you’re facing a potentially life- threatening medical emergency like a blood clot in your lung.

However, to get the care you need and you deserve, you have to act as your own personal advocate. You have to be committed to getting the information you need so that you can be an informed decision maker in your care.

Angella Beckford suffered a blood clot in her leg that travelled to her lung in 2019. Her experience that year left her stymied along the way by certain missteps and miscalculations by her medical team. She found her voice as an advocate during this challenging experience, and she shares her journey and insights about being your own best advocate below.

“My Blessing in Disguise” 

Angella Beckford, Guest Author and Blood Clot Survivor

My blood clot journey was a blessing in disguise: When I tell people this, they are rightfully confused, as they cannot understand how I could feel this way after the challenges I experienced with my most recent blood clot in the summer of 2019. I also had a previous blood clot in my leg diagnosed five years prior, in 2014.

What most people do not realize is that the anger, frustration, and fear that my most recent clotting experience caused allowed me to find my voice, self-advocate for my health, and aid others who have faced challenges similar to mine.

Background 

In July 2019, I had a massive blood clot that travelled from my leg to my lungs. It was misdiagnosed as a strained groin at a hospital in Toronto. Before this, I was a full-time employee at one of the universities in Toronto and I had a busy life. I lived independently while sharing the caregiving responsibilities for my aging, chronically ill parent. Despite my active lifestyle, I went to the gym three to four times a week.

Just a few weeks past my 45th birthday, I started having severe pain in the lower left side of my abdomen. The sharp pain trickled down my left leg toward my back and continued on and off for the next two days. By the third day, I was concerned and called telehealth. I was advised to go to the hospital emergency department.

When I arrived at the hospital, I was explicit with details about my symptoms and previous medical history. Various diagnostic tests were performed, including blood work, urine samples and an ultrasound. While I felt confident they would find what was causing the pain, I was informed otherwise. They could not find the source of the pain.

Still determined to find out what was wrong, I asked the doctor if any other test could be administered, and after a bit of convincing a CT scan was performed. To my dismay, after 10 hours of testing and being probed and poked, I was sent home. The emergency doctor said it was likely that I just had a strained groin. Specifically, he said, “I would bet you $10,000 that is just a strained groin, and you should take Tylenol for the pain.” He was convinced that my active lifestyle was a contributing factor.

For the next couple of days, the pain persisted, and I went to my family physician. I was hoping he could provide insight into the source of my pain, but unfortunately he was unable to do so, explaining that the medical report from the hospital was extremely vague.

Self Advocacy

The following day I woke up to unbearable pain and swelling in my left leg.  I knew something was wrong. I didn’t want to admit it, but I knew in my mind it was a blood clot. So, I packed an overnight bag, determined to return to the hospital to stay by any means necessary!

I was fueled by anger and fear, and I would not let anyone send me back home this time. Unknowingly, my self-advocacy took flight on that day, as I began speaking up and asking questions, documenting conversations, and amplifying my concerns about my care plan

While packing, I began to feel weak, lightheaded and nauseous. It was evident I wasn’t well and required immediate hospitalization, as I almost collapsed twice before getting into my Uber car.

Somehow, I found strength from within and got to my doctor’s office. I was afraid to go to the hospital. I was worried they would not listen to me and dismiss my pain symptoms again.

When I arrived at my doctor’s office, he observed my swollen leg and insisted I take an ambulance to the nearest hospital because I was unable to apply full pressure on my left leg. I declined and opted for an Uber back to the hospital. I began to cry as fear took over my mind.  To calm me, my doctor wrote a note advising the emergency doctor to rule out the presence of a blood clot in my leg.

Within three hours of arriving at the hospital, I was assessed and, this time, admitted with a massive blood clot. During the first few days in the hospital, my pain worsened daily. I was told it was normal. Then I began having tightness in my chest. Ignorantly, I thought the tightness was stress-induced due to anxiety. I was reluctant to mention my chest tightness. I feared it would be met with the same response that it was to be expected. I ended up casually telling the attending nurse about my chest symptoms. Within a couple of hours, I was sent for a CT scan, where it was discovered days after being admitted that I had multiple blood clots in both lungs.

Self Advocacy is Asking Questions about the Care Plan

At this point, I was confused about what to expect with this blood clot. The symptoms did not mirror my experience with my first blood clot in 2014. This pushed me to advocate more for myself by insisting something was wrong and repetitively telling the care team I did not want to die, “I have things to do with my life.”

Finally, on day five, after admittance, a medical internist assessed me. I will never forget this clinician. He was the first who listened to me and made me feel valued. He heard my voice! Upon assessment, he made sure to listen to my concerns about what more could be done to alleviate the pain I was experiencing. He immediately alerted the care team with instructions to be more aggressive with my treatment plan. The first procedure performed on my leg consisted of them blasting the clots and inserting a stent into my leg, which I found extremely painful. During the procedure, the cardiac team was called, as I had I passed out during the process.

After the procedure was complete, I felt optimistic that I was on the road to recovery. I began therapy and all seemed well.

Self Advocacy is Speaking Up and Documenting Conversations

Sadly, five days later, the pain returned to my left leg, but this time it was worse than before. I knew I had to speak up and inform the nurse who I felt safe with.  My trust quickly dissipated, however, when the nurse dismissed my pain, saying it was likely caused by my scented body lotion, which probably caused irritation.

Fortunately, the attending doctor had not made their rounds yet, and I had the opportunity to share my ongoing symptoms with him. I anticipated I might be dismissed again, so I hid my phone and voice-recorded the conversation. I felt I needed to have proof of this exchange in case I was gas-lighted again and things took a turn for the worse. I was afraid I was going to die.

To my surprise, the doctor listened and immediately had my leg scanned. Within one hour it was discovered that new clots had formed in my left leg. I was rushed to the ICU for a second procedure in which additional stents were placed in my leg along with a balloon.

Self Advocacy is Seeking Guidance

I was confused and didn’t understand how new clots formed in my leg. I asked why this happened, and I was told this was unusual without further explanation. At this point, being week two, my confidence and trust were low. I somehow developed the strength to be purposeful in my self-advocacy by asking questions and recording every conversation I had with the doctors and the care team.

I repeatedly asked to speak with the thrombosis specialist, as I had many questions about my health condition and its long-term effects on my mobility. To feel safe, I asked for another ultrasound to put me at ease. At first, the on-call hematologist stated it was unnecessary. I firmly reminded him about the mishaps and challenges while in the hospital.  They finally agreed to do another examination before my transfer to rehab for mobility support. After almost four weeks in acute care, I was transferred to a Toronto rehab centre, where I spent more than a month.

I had to attend a scheduled follow-up appointment to speak with the hospital’s thrombosis specialist, who I had only met briefly before while I was being discharged from the hospital to rehab. When I met the thrombosis specialist, he questioned my disability, asking me why I was in a wheelchair. I was shocked and responded, “You tell me.” Immediately upon returning to rehab, I asked my doctor for support in requesting a new thrombosis specialist and, thankfully, he followed through on my request and I have a new thrombosis specialist who specializes in cardiovascular care at another hospital.

The rehab was also instrumental in supporting my mental well-being, providing wellness support in the form of psychotherapy and mindfulness workshops.

Self Advocacy is Educating Others

As a rehab inpatient, I discovered my voice when I was invited to share my horrific experience and to discuss areas to improve patient and healthcare provider relationships. As a result, I am now co-chair and patient advisor for the Toronto rehab’s Patient Family Advisory Council.

My blood clot journey helped me find my voice in spaces I never imagined being in and I decided to extract the positive from a negative experience to help others. I need to be a voice for the voiceless, especially for many Black and POC women who are no longer here today to share their stories.

For more information about blood clots, click here.

To view and download educational resources about blood clots, women’s health, and contraception decision making, click here.

Click here to download a risks self-screener to complete and discuss with your healthcare provider when considering your contraception options.