Kathy Summerfelt’s Blood Clot Story

Categories: Patient Stories

Kathy SummerfeltMy 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.
Author: admin

5 Responses to "Kathy Summerfelt’s Blood Clot Story"

  1. alix Posted on July 28, 2014 at 2:57 pm

    I had similar experiences with pulmanary embolisim in 2000 have had a hell of a time with peri menapause and adrenal failure also migraines from estrogen dominance. I am s protein deficient. I can say that it is a nightmare so far and every day is a challenge.

  2. Emily Posted on September 6, 2014 at 11:29 pm

    I have taken hormones for menopause years ago and still had the migraines. It goes away in time.
    I had an extensive clot in my upper arm last year with no symptoms other than pink spots on my arm.
    Intuition got me to beg a doctor for tests.
    I am grateful to be alive with no surgeries.
    Best of luck to you.

  3. Mary Posted on September 24, 2014 at 4:47 am

    I have multiple blood clots in my dominant arm (left) and was told by a physician not to worry as they were in the surface basilic vein. I explained that I was travelling across country by car and was told it was OK! Five days later in Pennsylvania, I developed shortness of breath and severe chest pain. ER docs said I had a Pulmonary Embolism. I spent 4 days on Heparin, discharged on warfarin. Driving home, I developed severe chest pain and SOB , wound up in the hospital in Las Vegas (home) and a cardiac workup was done. No PE, started bleeding from throat, nose, and rectum. I stopped taking the warfarin on my own! Cannot get a doctor appointment until 10/1/2014! If I die from a blood clot (Pennsylvania physicians told me I have a genetic factor for developing blood clots) THANK YOU medical community in Las Vegas! I have a healthy, retired RN, BSN and am appalled at the lack of medical care in Las Vegas!!!!

    • Samantha Posted on October 27, 2014 at 3:12 pm

      @Mary, I hope that you are doing better. I know how stressful that must if been for you and hope all is well. God bless! Xoxo

  4. Jeana Posted on November 11, 2014 at 4:18 pm

    Thank you all for posting to this site. I’m getting educated about DVTs/Clots. I was diagnosed years ago with Factor V Leiden (hetero). I had a family memeber test postive and my doctor was more than willing to order the DNA test for me (my sister and I have the genetic c dificiency). My question is what kind of ct is done to detect a clot. I’ve been having some problems on exertion. I feel a tight squeezing in the middle of my chest and I get out of breath more easly than usual. I thought I was having some heart issues and had a ct of the heart. The heart doctor said your heart looks good but lungs not so good. I was sick at the time ahd was diagnosed with possible pnemonia. My doctor has said for a while now that he thinks I also have some form of astma (I dont’ respond to astma inhalers). I just had a follow up ct w/contrast and the infiltrates are no longer there but several nodes are appearing in different areas. Could this be clots and not really nodes? Thanks for any input as I really appreciate learing more about this condition.

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