Personal Stories

Our Real Experiences Have the Greatest Impact.

Of all the educational tools and techniques available to us, the personal stories of women who have been impacted by blood clots are the most successful in helping people to connect with the issues and understand the risks associated with hormonal birth control.

We will be sharing a number of these compelling stories with you in the upcoming year, beginning with that of our organization’s namesake Alexandra Rowan.

Young woman holding baby
Mason_Alice 2022

Alice, from England, shares her blood clot experience following the birth of her son

At five weeks following the birth of my son, I developed a headache. Initially I thought nothing of it, assuming it was probably just “new parent” fatigue. Throughout the evening and into the night, the severity of my headache increased, developing into what I thought was my first-ever migraine. I took several strong painkillers but nothing was touching it. Overnight I struggled to sleep and spent the vast majority of the following day in bed, still trying to sleep it off. Looking back, I remember being very clumsy with my right side, which I know now was a sign that something more serious was wrong.

The day rolled into another night and I hoped that the following day I would be back to normal. Unfortunately, when I woke up the next morning it was clear that instead of feeling better as I had expected, things were worse. I was struggling to use my right side, needing help from my husband to get out of bed and down the stairs. We decided to call for emergency help and transportation, but by this point I could no longer raise both hands above my head and couldn’t stand or move my right side independently and it became apparent that it would be quicker to go into A&E (hospital emergency department) ourselves.

When we arrived I was seen quickly and admitted for an MRI. When the doctors returned, I was told that I had a cerebral venous thrombosis (a blood clot on my brain). I was informed that the most likely cause was my pregnancy. I was later admitted to the Stroke Ward where I stayed for around two weeks. During my time in hospital, I had two seizures and for the first five days remained paralysed down my right side. I was put onto anti-seizure medication and blood thinners or anticoagulants. On day six of my hospital stay, I started to regain control of my fingers and toes, which was a very exciting moment. From that point on, I received daily physio and my physical recovery was fortunately rapid. I was discharged earlier than anticipated just in time for my first Mother’s Day with my little boy.

Since my discharge I have had many ups and downs. I have found it particularly challenging to overcome some of the mental stresses I have faced, including night terrors and extreme panic attacks. However, I feel so fortunate to be where I am today and am now experiencing many more good days than bad. I know that my recovery will take time and patience but when I look back to where I was just a few months ago I know that I have come such a long way.

I recently came across my post-labour discharge notes, where I noticed the words “risk of thrombosis.” In fairness, I was discharged from hospital with a ten-day supply of anticoagulant injections after my spinal anesthesia, however no one ever spoke to me about the risk for clots or signs to look out for. I would urge new mothers to ensure that they have read their discharge notes, speak up if they have any concerns, and ensure that they know the signs and symptoms of blood clots.

Alex with God-mother
Thoughts on Alex

Thoughts about Alex Rowan by her Godmother, Sherry

I remember exactly where I was when I received the awful news that Alex had died. As a home health nurse, I was in a patient’s home making a visit: My cell phone rang and it was my daughter calling. Concerned that it might be an emergency, I excused myself and went outside. My daughter asked if I had seen the Facebook post about Alex dying. I quickly read it, was shocked, and told my daughter that I’d call her back when I was finished with my visit. I did so in a state of disbelief.

I had been so excited when, in August 1990, I received a call from Dave, Alexandra’s father, letting me know that his wife Roz had given birth via C-section to a baby girl. She was over two months premature, but as Roz had developed problems, surgery had been necessary. Alex was tiny but it appeared that she’d survive.

I’ve known the Rowans since 1976 and knew all that they’d gone through to have a child; multiple tests, surgery, medications, and finally, a successful IVF course after prior failed attempts. I was overjoyed and honored to be named Godmother to Alex. I followed her life closely through her years of private school where she did well, pursuing extra activities. She didn’t date, but was a happy teenager. Her parents exposed her to many cultural events and she became a very mature lady.

I led mission trips to Rosebud Indian Reservation in South Dakota and Alex was a team member on several occasions. She helped raise funds for these trips at her church. On the Reservation she worked hard, helping with bible school, working on fundraisers for the locals, and helping with projects such as the renovation of an old church. She made poignant observations during her time there, and wished she could do more to help.

Montana and Yellowstone Park were favorite places for Alex to visit. She loved the wolves at the Grizzly and Wolf Discovery Center in West Yellowstone. She even ‘adopted’ a wolf to support the Center, and this love of wolves made it easy for me when birthdays or Christmas rolled around. Whenever her family and mine got together, lively games were in order, all of us enjoying it very much.

After Alex died I asked if I could scatter some of her ashes on Rosebud, and Dave also asked for some to be spread in Montana. I took them to the Reservation’s cemetery and scattered them over the grave of someone she knew who’d died, while an Indian friend said a prayer. I took some into Yellowstone Park and scattered them around favorite places. I also took some to the Wolf and Grizzly center and unobtrusively scattered ashes near the wolves’ enclosure. I buried more ashes near my condominium in Big Sky. Alex’s favorite color was purple, and a few days after burying her ashes, two small purple flowers bloomed above them.

I miss Alex and treasure my memories of the 23 years she blessed my life. Her pictures are displayed around my home; I especially like the one with Patrick, her dog. Even now, I still ask why, why only 23 years?

Rachel Headshot

Rachel

As a healthy, nonsmoking, 24-year-old woman, you don’t expect chest and leg pain to mean blood clots. I had been on hormonal birth control since my early teens.

Over the years I had frequent migraines, and in response my doctors increased my pill to types with even more estrogen.

In 2019, I had a severe Charlie horse in my left leg for a few weeks. One evening my chest started aching, then a shooting pain in my leg and my heart started racing. I took a shower and went to bed, thinking it was anxiety. The next morning I was sweating and couldn’t catch my breath as I got ready and arrived to work.

When I got to the ER the doctor said I was “lucky to be there.”

After numerous follow up appointments, my doctors will not pinpoint a “smoking gun” cause of my deep vein thrombosis (DVT, blood clot in leg) and bilateral pulmonary embolism (PE, blood clot in lung). Now that I am off hormonal birth control I feel better, and I immediately stopped having migraines and gaining weight.

If only someone had explained the risks of hormonal birth control, as well as the symptoms of blood clots.

Alex Rowan
Alex Release Photo

Alexandra Rowan

With endless possibilities for a bright future, 23-year-old Alexandra Rowan, a University of Pittsburgh graduate with a double major in writing and communications, had what many young women just starting a new life dream about: A blossoming new career in a bustling and hip city, a loving family, a devoted boyfriend, a growing circle of friends, and an independent spirit that compelled her to travel and explore the wonders of the world all around her.

Sadly, however, Alexandra’s life ended suddenly, when she collapsed due to a massive pulmonary embolism, or blood clot, that had formed in her lung. Without warning the life of this beautiful young woman had ended, without any clear signal or advance warning that something was wrong.

Alexandra’s only known risk factor for blood clots was estrogen-based birth control.