Kathy Summerfelt’s Blood Clot Story

Categories: Patient Stories

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 info@stoptheclot.org with questions about this matter.

My name iKathy Summerfelts 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

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

  1. alix
    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
    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
    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
      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
    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.

  5. colin
    colin Posted on July 13, 2015 at 1:47 am

    I have been diagnosed with large dvt in left leg eventually after going to doctors 3times and given pain killers
    sent to have ultra scan first scan revealed nothing swelling in left leg &pain continued
    and was sent for second scan which discovered a large clot its been 4months now its still scary
    especially aft er seeing hematologist and told me if the clot travels to my lungs I have no chance of survival
    let’s just say I was more than scared when I asked how will I know if and when my clot will go
    will they do another scan I was told they don’t do secondary scans I now take warfarin
    is this right they don’t scan again how will I know if I have any more clots oh and I have a few new symptoms like
    foot swelling up what looks like little pink spots stinging in the groin viens swelling up on my left leg and still in pain
    or am I just paranoid get well soon