Michael Deal Tells His Blood Clot Survival 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. 


Michael_Deal_1During the summer of 2008, I started feeling lightheaded when I walked up stairs or tried to lift something heavy.  This was a strange and new experience for me, since I go up and down stairs at work or at home about 30 times a day without effort.  I was then 41 years old and in decent shape.  I played racquetball twice a week, was rarely sick and never spent a day in the hospital. I wasn’t sure what to think about this and figured it would go away.  Any other time I had any symptoms, I just went about my business until it went away.  I figured that it shouldn’t be any different this time.

After three days, I decided to see a doctor because my symptoms were getting worse.  I thought I might have an ear infection that was causing my lightheadedness. I found out quickly that it wasn’t an ear infection, because my doctor admitted me directly to the hospital.

The doctor’s first suspicion on my admission was a pulmonary embolism (PE), and she was right.  The scan showed blood clots affecting every lobe of my lungs. The doctor was surprised I was still upright. Needless to say, I was admitted, and began my first ever hospital stay.  Five days later I was discharged home when my INR level was regulated and my condition stabilized.

I learned that the standard treatment for a first time blood clot patient is blood thinners for six months, when the blood clot is presumed to come out of nowhere, and testing for blood clotting disorders is negative.   All my testing in the hospital was negative, but because of the extent and severity of my clots, I had a hard time accepting that this was a one-time event without any other identifiable causes or risks.   After doing research and talking to people, it seemed to me that everyone had an explanation for their clot; whether it was birth control pills in women, recent surgery, prolonged travel, or something else.  I could not identify any specific trigger, but still felt something was wrong.

When I discussed my concerns with my pulmonologist, she said there is additional testing they can do for blood clotting disorders.  I agreed to this testing, and found out I have Protein C deficiency.  Protein C balances pro-clotting and anti-clotting proteins, so when there is less produced in the liver (deficiency), there is a higher tendency to clot.  I found out that it is a genetic blood clotting disorder that is present in less than 0.5% of the population.  Relative risk for DVT/PE in people with Protein C deficiency is about 7 times that in the general population.  Since risk increases with age, I am more likely to have a blood clot recurrence, so will take blood thinners for the rest of my life.

I am fortunate that blood thinners have been easy for me to manage.  I just have to remember to take my medication and go in for my monthly INR.  My warfarin dose has been stable and I’ve had almost no side effects.  Surprisingly, I do not look at my life much differently now than before, and I have very strong faith that God is taking care of me.

My advice to others is two-fold.  1) Even if you have never been sick before, go to the doctor when you don’t feel right, in my case, when I felt lightheaded.  You never know what it could be.  This was the most important lesson for me!  2) If something is telling you that something does not seem right or that you need more information, encourage your doctor to work with you to find out what might be the cause.  In my case, I found out that I had a blood clotting disorder, which may have gone unnoticed, if I hadn’t wanted to investigate the reason for my clot.  Each of us is different, and standard treatment varies according to individual history and conditions.

 

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7 Responses to "Michael Deal Tells His Blood Clot Survival Story"

  1. Shirley
    Shirley Posted on October 26, 2013 at 3:03 am

    I had the same symptoms as you before my PE in both lungs. I was suddenly getting out of breath while bicycling which was not normal as I bicycle for about 12 miles a day. I went to the Dr. and he scheduled a stress test for my heart since my Father had a serious heart attack at an early age. However, shortly before the stress test appt. I got severe symptoms (pain in the back and chest as well as shortness of breath). I went to Emergency and they didn’t believe it was anything serious and sent me home. Within hrs I had to return to emergency and the Dr. on call decided he’d better x-ray. Upon seeing the x-ray he thought he could see something wrong in my lungs so he ordered a cat scan and the PE was diagnosed. Thank God I got a Dr. that was on the ball that night. That was over a year ago. I am still on high doses of Warfarin and my family Dr. simply assumes that I had a DVT in my leg without having even examined my leg. I feel the same as you did. I have never had any special tests and won’t feel safe until all other possibilities of an underlying condition are ruled out especially since I still get a lot of pain and further symptoms. However, I don’t know how to go about getting a Dr. to agree to further tests. I guess I just have to be firm and go to another Dr. if my usual one won’t pursue it.He’s 80 years old so he can be rather blase about things. I will first ask him about the test you received and see what he says. Thanks for your story.

  2. Elin Saxby
    Elin Saxby Posted on January 13, 2014 at 12:51 am

    I would like to know how many people have “Factor V” and have a history of Blood Clot’s. Also what about “Alpha One Antitrypsin Deficiency”?

  3. Jeff Williams
    Jeff Williams Posted on May 23, 2014 at 2:19 pm

    I had a similar occurrence to Michael while referring a football game. I experienced shortness of breath, chest pains, and light-headiness. I stopped officiating that game and thought the symptoms were related to a cold that my wife recently had experienced. The next day I relaxed and went to a college football game and experienced the same symptoms, I could barely walk 100ft without having to stop. I went to the emergency room and they ran a CT scan and found the blood clots within my lungs. I stayed in the hospital for 8 days until my INR levels stabilized. I remaining on blood thinners for a year and recently had additional blood test which diagnosed my protein C deficiency. I will immediately resume taking blood thinners (cumadin or xarelto) to prevent future clotting. Thanks

  4. Coley Emde
    Coley Emde Posted on August 25, 2014 at 7:29 am

    Thank you for sharing and you are so very correct about researching! I suffered exercise tibia fracture resulting in clot that caused a minor TIA, which was diagnosed as ‘anxiety’ because I had shortness of breath. And although my initial presenting symptoms were 3 different altered speech patterns, involuntary arm movements, disorientation, dizziness, etc., I was truly just treated like an anxious ridden 38 year old woman. It wasn’t until months later, now 7 months from TIA, and ALOT of pursuance on my part that I’m finally getting more answers, Factor II mutation as one of many. I went to the ER 2 other times before Factor II diagnosis and was told it’s pneumonia, asthma, seizures, etc etc. It can be very difficult to be taken medically serious, and I have all kinds of other stuff including Addison’s, Thalassemia, full spine scoliosis, osteo, all cervical discs herniated, etc. Unfortunately I think this hinders me in that a few physicians may think I’m a hypochondriac when it’s quite the opposite, I minimize my symptoms according to my regular docs. They say I have too much of a bubbly go getter personality and deal exceptionally well with it all. Thank goodness for being Italian!!

  5. Edward crowley
    Edward crowley Posted on February 1, 2016 at 5:50 pm

    I also have a blood clotting disorder and was not identified until I started to clot on warfarin and lost my leg due to a clot I am now on heparin

  6. Roberta Raasch
    Roberta Raasch Posted on February 19, 2016 at 8:58 am

    Edward Crowley so sorry to hear the
    your loss of your leg.
    After knowing my entire life about my dads brother having blood clots. Uncle Bill.Bob and my dad. Diagnosed in1999. I suffered a blood clot that nearly took my life in 2000. I was a very fit active person and went on a cabbage soup diet. To lose more weight without knowing I had nearly caused the death of me and felt lightheaded shaky weak and was on my 3rd bottle of ibuprofen. Er doc sent me home.
    As I got much sicker I was at work and waited for a guy to take my shift the next day. This was in 2000. I ended up.leving my work on a hot day. Told at hospital Er I could have pneumonia. I said no. Double check. Sure enough I sat in wheel chair I could no longer walk so dizzy. I was soon admitted. We did family testing. My twin sister. My son. My other sister we all have Protein C Deficiency. We are actually born with it. Heredity. I am so greatful I am still here. Me and my twin are 52 now.Anytbing Green thickens blood and fast. It does not matter. Whether you are fit as a fiddle and perfect shape a blood clot can sneak up. You can be thin or thick. I am no longer the perfect fit chick I used to be. A cabbage soup diet nearly killed me! There are signs also I noticed in my family or symptoms. Without treatment. You do not need a winter coat when you get hot frequently. Anger and temper tantrums. Very bad migraines where you get vision issues constantly. Leg cramps. Anything healthy, greens such as Lettuce, Spinach, broccoli Kale cabbage green teas herbs etc… Soy product….

    • staffan
      staffan Posted on March 30, 2016 at 3:02 pm

      Interesting u should say migraines. I have protein s def. Recently had my first PE+DVT. Ive always had weird headaches often w symtms involving my eyes. never actually wnet to the doc but guessed they were migraines since they responded to triptanes. Now when im on pradaxa, ive had way less headaches even thoigh i work same as before etc.