The personal story below is intended for informational purposes only. The National Blood Clot Alliance (NBCA) holds the rights to all content that appears on its website. The use by another organization or online group of any content on NBCA’s website, including patient stories that appear here, does not imply that NBCA is connected to these other organizations or groups or condones or endorses their work. Please contact firstname.lastname@example.org with questions about this matter.
My name is Kathy and I survived pulmonary emboli in 2003.
I remember as young as 12 years old feeling pain in my chest. When I asked in 1979 it was dismissed as growing pains. When I asked a doctor in 1989 I was told it was panic attacks. I spent years thinking that I was unable to control my own stress.
For several years leading up to 2003, I was misdiagnosed with asthma. My medication became more and more intense as I found breathing more and more difficult.
In 2002, I suffered from pneumonia that I failed to recover. For a year I was told there was nothing wrong with me. I felt I was dying but I didn’t know of what and my doctors couldn’t find anything to explain my failing health.
On June 22, 2003, I felt the worst pain in my chest. It doubled me over. That evening my back felt hot as if I had a sunburn. The next day at work I couldn’t walk a few feet without gasping for breath and taking a rest.
I went home and called a health line. They told me to go directly to the hospital. That evening, I went through test after test finding nothing until a D-dimer was done and the result was a possible clot. I was given heparin and sent home for the night only to be brought back for a VQ scan (a nuclear scan that studies both airflow and blood flow in the lungs) that confirmed what looked like a “spray” of emboli in my lungs. I was told it looked like a large one had broken and sprayed my lungs with emboli.
All tests done again found nothing and I was told to prepare myself for “crap happens” that’s not in my nature! I pushed for more tests and 1 year later was diagnosed with protein c deficiency. I’m on a lifetime of warfarin therapy and feel so much better.
I now realize that since I started on warfarin, I haven’t felt the pain in my chest and small clots must have been dropping into my lungs for a long time. I count my blessings everyday. I survived two pregnancies and I have been fortunate enough to watch my children grow into young adults. My story should never have been a series of misdiagnosis, but because clotting disorders are not seen as common, they are over looked.
The real issue is that now I cannot use hormone replacement therapy for menopause. I am finding it very difficult because I’m suffering from very a many symptoms associated with menopause and the conventional treatment is not appropriate for me because of my clotting condition.
Take Home Messages:
- Sometimes pulmonary emboli are misdiagnosed as other conditions, such as asthma or pneumonia
- When you are having symptoms of blood clots, it is important to get the proper treatment and you may need to be assertive to get that treatment
- If you have a clotting condition, you may have to take anticoagulant medication, such as warfarin, for life to avoid more potentially deadly clots.
- Women going through menopause may not be able to take hormone replacement therapy if they have clotting conditions.