Trust Your Gut: Kaitlyn’s Story

Trust Your Gut: Kaitlyn’s Story

In April 2013, I traveled to Japan to visit my brother, and then to California to visit my grandfather. When I got home from my two-week vacation, I woke up one morning with a shooting pain in my leg. I thought perhaps I slept wrong or I wore the wrong shoes at work the previous day. I had been on my feet for more than ten hours. I went to work that day and did everything I could to stay off my right foot. I took as much over-the-counter pain reliever as allowed to try to relieve the pain.

This condition continued for several days, before I turned to the Internet for a self-diagnosis. I typed “swollen and shooting pain in leg” in the search field, because it was the easiest thing to do. One of the first things to pop up was “blood clot.” I was really freaked out, so I called my doctor to schedule an appointment. I informed the nurse that I thought I may have a blood clot, due to my Internet search, and the fact that my leg was swollen. It was May 1 and the nurse asked if I could come in on May 3. I said I would prefer to come in on another day because May 3 was my birthday, and I didn’t really want to spend my birthday in the doctor’s office. Her response was, “If you think you have a blood clot, you need to be seen right away.” I agreed and made the appointment.

On May 3, I kept the appointment, and, without even touching my leg, my doctor said to me, “So, you think you have a blood clot?” Then, he shrugged his shoulders and said, “You don’t.” He just sat on his stool and said, “It must be a lower back issue, just like your dad.” I will never forget that shrug. I said “I am a wedding planner, not a doctor, so if I don’t have a blood clot, what needs to be done to get this pain to go away?” He prescribed prednisone for a week. If the pain did not diminish within the week, I needed to go for physical therapy for six to eight weeks. If the pain continued, he would then schedule an MRI. I left his office that day thinking I had a ruptured disc in my lower back.

After taking prednisone for a week with no decrease in pain, I called my doctor to get the name of a physical therapist. The one he suggested didn’t take my insurance, so I had to pay out of pocket. The first appointment lasted less than 15 minutes and cost $150. I spent more time in the waiting room than with the physical therapist. The physical therapist never looked at my leg, and he never even had me remove my shirt so he could evaluate my back. He read my chart from my physician and told me I needed to lay flat on my stomach for an entire day and then return the following day. So, I told my boss I needed to work from home and spent the entire next day lying flat on my stomach.

At my second physical therapy appointment, the therapist brought me to tears when he used a metal rod to push up and down my already swollen leg. I left his office that day in absolute shock. I don’t even remember how I got myself to my car, but I will never forget how I had to crawl out of my car and up two flights of stairs to my bedroom, where I collapsed on my bed and cried myself to sleep. That night around 2:00 a.m., I woke up in the worst pain I have ever been in – my leg felt like it was on fire. The entire right side of my body was overcome with shooting pain that seemed to go on forever. I cried so much that I eventually cried myself back to sleep.

The next morning, I called my primary care physician (PCP) and said that I would not go back to that physical therapist for two reasons: He was too expensive, since he didn’t take my insurance, and I just wasn’t comfortable with him. I asked for a recommendation for a business that accepted my insurance and had a female therapist on staff. He suggested I call one of the local fitness centers, as they had a separate physical therapy business. I immediately called to make an appointment, but unfortunately, I wasn’t able to get one for about two weeks later. So, for almost two weeks, I spent every morning, afternoon, and evening dragging my right leg behind as I walked, crawling up and down my steps, and trying my best to give my all at work. It was exhausting and excruciating.

Within five minutes of meeting with Rebecca, my new fitness center physical therapist, she said “I am not a doctor, but I think your PCP is wrong. I don’t think you have a back issue, I think you have a blood clot.” My entire body went numb when I heard those words come out of her mouth. I had not mentioned to her that I originally thought I had a blood clot, but I had seen my PCP and another physical therapist who both thought it was back related. Why would I not believe and trust two other health professionals? She quickly got out a tape measure and measured from my hip to my ankle on both legs. My right leg was a solid two inches bigger than my left due to swelling. I was terrified. She told me she would call my PCP and ask him why he didn’t schedule an ultrasound and also request that he do so. She said she wouldn’t treat me as a physical therapy patient until a blood clot was ruled out.

The next day, May 23, I received a phone call from my doctor’s nurse confirming that I had an emergency ultrasound scheduled later that day. I went to work, dragging my foot behind me as I met with clients. I left the office mid-afternoon to head to the hospital for the ultrasound. After the technician finished the ultrasound of my left leg, I was greeted by two doctors who delivered the worst news of my life. I indeed had a blood clot. I had a very severe deep vein thrombosis or DVT, and they needed to admit me to the hospital immediately. I lived with a severe blood clot for a solid 20 days. I instantly crumbled and tears took over my face.

When I was moved from the outpatient part of the hospital to the emergency room, one of the ER doctors asked if I had any other pain besides my leg and I said no. I said I had a little heartburn, but I thought it was likely just from stress from the last few weeks. Luckily, this ER doctor decided to send me for a CT scan, just to be safe. As I write this, I am brought to tears thinking about how Rebecca and this ER doctor truly saved my life. The CT scan results showed that I also had a blood clot in my lungs – a pulmonary embolism or PE. I was admitted to the hospital and started on blood thinners. I instantly felt betrayed by my PCP.

I was in the hospital for three days. While there, I was tested for various clotting disorders. The results indicated that I had a blood clotting disorder called factor V Leiden (FVL). I also had been on birth control for many years. The combination of birth control, my flight to Japan, and FVL is likely what triggered the first clot. I was 28 years old when I was diagnosed and when my life changed.

Since May 2013, I have had two additional clots in my lungs. I have taken many anticoagulants, including pills, injections, old and new blood thinners. I will be on blood thinners for the rest of my life. My doctors believe that the second visit to the expensive physical therapist – who performed that painful technique of massaging my leg with a rod – is what caused the clot to break and travel to my lungs. Before I left the hospital, the doctor handling my case told me that I was very lucky to be alive and that I needed to find a new PCP.

For the past three years, I have watched my life change. I had a nasty allergic reaction to low molecular weight heparin, which sent me back to the hospital. I am scared every single time I have heartburn. I bruise so bad from taking blood thinners that my skin turns a dark blue shade, and I may never be able to carry my own child due to my blood clotting disorder and my body rejecting injectable blood thinner medications. My leg is swollen every single day, it is heavy, and it hurts after standing for long periods of time. I do my best to stay positive, but to think that I was misdiagnosed by someone who is trained to help people is terrifying and heartbreaking. To think that the PE could have been caused by a procedure that I didn’t need is mind-numbing. Two medical specialists missed the clear signs of a blood clot, because they thought it was a lower back issue – yet there was no proof of that because there were no tests done. They took the lax approach and put my life on the line. I could have died at age 28.

I should have trusted my gut then, but I didn’t. I won’t make that same mistake twice.

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To learn more about risk factors for blood clots, please click here.
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To learn more about birth control and blood clots, please click here.

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