Katie was a junior in high school in 2007. Her periods were irregular and her doctor suggested that she begin taking birth control pill to regulate them. We told her physician that her father had been diagnosed with factor V Leiden after a tiny stroke at age 39. We were told that this constituted a “very small risk” for Katie.
After a few months on an old brand of birth control, Katie was switched to a 3rd generation pill, The trouble began almost immediately. She first noted a cramp in the back of her thigh when she walked up stairs, and the diagnosis was determined to be sciatic nerve irritation.
Katie woke before dawn one morning with excruciating chest pain. It hurt so bad to that she had difficulty taking a breath or making any move to grab her cell phone off her bedside table. At 10 am, I found her sitting bolt upright in bed with puddles of tears streaming down her face. She asked me in a whisper to take her to the doctor. This is a kid who is doctor phobic because of medical problems when she was an infant. She rarely cries, and barely shed any tears the three times she broke bones.
We called the cardiologist and he said to wait for the appointment we already had for the next day. A whopping dose of ibuprofen helped, and the next day the doctor listened to her lungs. The chest pain was diagnosed as pleurisy (inflammation of the lining of the lungs), and subsided after a few days of ibuprofen and pain killers.
A few days later, Katie spent 6 hours on her feet at a concert with nothing to drink. When she got home, she took off her jeans and freaked out. I took one look at her blue, swollen leg and had my husband carry her to the car. On the way, I called the cardiologist and informed him that Katie had a DVT and PE. I knew enough about medicine to know what I was seeing, even though I was unaware of how serious it was. When the admitting doctor seemed alarmed, I knew things were bad. A short time later, Katie was in a helicopter on the way to a larger medical center.
At both hospitals, the reactions of the healthcare team were contradictory. Every nurse assessment was that it was not a DVT, because usual symptoms are skin that is red and hot, not cold and blue. Yet the doctors all said, “That’s a big DVT. I bet you are on the pill, right? Those new pills, right?” I later found out that my doctor will no longer prescribe 3rd generation pills or the new ring style birth control because he has seen too many clots in young women.
The clot finally stopped growing after 4 days of treatment. Her clot (DVT) ran from low in her calf, up the vena cava and almost to the kidneys. Katie’s condition was considered so critical that she was not even allowed into the adjoining hallway to see the Queen of England who was touring the hospital at that time.
After 19 days, Katie was released on Coumadin®. Injectable low molecular weight heparin was not working well, and Katie has no belly fat so the injections were a nightmare for her. She was only allowed to stay on Coumadin for six months, because there is a higher risk for teenagers to be involved in car accidents, which increases any potential to die from a bleed. We looked into extricating the clot, but she was too sick and we missed the window of opportunity – after a few weeks, the clots get too stiff, and extrication is not an option.
I’m very proud of Katie. She wears her compression stocking – even with a mini skirt or a prom dress. She was very faithful in taking her medication and watching her diet, wore her pretty bracelet to alert people that she was on Coumadin, and was persistent about the physical therapy to counteract a back problem she developed from sleeping upright for 6 weeks. She is not quite over her needle phobia, and now uses numbing cream to prepare for and cope with blood draws. She yells back at the TV when she sees the birth control ads. Sadly, she had to drop a cosmetology school program in which she had enrolled because she just can’t stand up for long periods. And it is tricky for her to find jobs that keep her active but not on her feet for hours at a time.
I’m joining NBCA because I think public awareness of clot symptoms is vital. I also want gynecologists to learn what hematologists know about birth control and a family history of clots – predictable periods and clear skin are not worth dying for!!
Katie is also joining a lawsuit against the birth control manufacturer.
You can read more about Katie in the New York Times: Insurance Fears Lead Many to Shun DNA Tests http://www.nytimes.com/2008/02/24/health/24dna.html?_r=1. This article is old – insurers are no longer able to discriminate against people who test positive but have no symptoms!