A Survivor Speaks: Un-Exploded Me by Patty

I recently celebrated my three month anniversary of surviving PE with a simple Facebook post about this “accomplishment.”  Not sure why I chose this word – getting to this point doesn’t seem like much of a triumph or an achievement.  It just is.  Just shy of this milestone, I was starting to feel my old self again. No pressure on my chest or need to inhale deeply. Now, just several days beyond this three month mark, those sensations are back again.

This is not my first “dance with death” – I was diagnosed with a DVT in 2008.  Back then, the greatest struggle was learning to cope with self-injecting Lovanox during my recovery and, any time later when I flew on an airplane for more than three hours.  Other than that, it was a simple baby aspirin daily and a “note to self” not to sit for long periods of time. Oh yeah, how could I forget – those lovely thrombosis socks.  Even my diagnosis of C-protein deficiency didn’t alarm me in any way.

PE changes EVERYTHING.  On September 22, 2013, after running to catch my commuter train home, I sat down, caught my breath and experienced a sudden shooting headache.  As the ride ended my headache dissipated. However, when I stood up, I suddenly felt terrible shooting pain across my chest and in my back and jaw.  As I had worked for the American Heart Association for a brief time, I was convinced I was having a heart attack.  My sister, a current AHA employee, picked me up at the station. We had planned to go shopping in advance of her move into our new two-family house taking place the next day.  I told her I didn’t feel well and explained my symptoms.  She insisted upon taking me to the hospital (she actually wanted to call 9-1-1- but I wouldn’t’ let her).  Ironically, as we approached the hospital my pain had completely disappeared.

After a thorough exam by a nurse practitioner, I was given a D-Dimer test.  The test had come back positive, but the nurse believed it could be associated with my old DVT.  To be certain, I was sent for a CT Scan.   At this point, I was completely positive.  I never associated the recent episodes of panic attack, shortness of breath or the feeling of weight on my chest with anything other than my recent weight gain.  As I awaited the result of the CT Scan I fully expected to be going home that evening.  I couldn’t be more wrong.  I’ll never forget the look on the nurse’s face when she delivered the news – multiple bi-lateral pulmonary emboli.

And then it happened.  I was immediately rolled out of the ER holding area tears running down my face in complete disbelief, hooked up to every kind of monitor possible and set directly across from the nursing station.  By Midnight I was in the ICU where I would stay for a full week.

On the eve of undergoing a relatively new procedure for treating sub-massive PEs – Catheter-directed Thrombolysis (a procedure worthy of its own blog) – I received what is known in my faith-tradition as “anointing of the sick” – also referred to as “Last Rights.”   Despite the finality of this beautiful blessing ceremony, I don’t think I fully grasped the severity of my situation.  In total, I spent 15 days in the hospital.

Upon my return home, I wanted to jump back into life and quickly realized I couldn’t.  Just one week following my return to work (two weeks home from the hospital), I contracted a severe virus and was hospitalized again.  One more ER visit followed as my anxiety hit an all-time high and breathing was difficult.

Since that time, I’ve learned my lesson; each day is a new challenge because each day is not the same as the previous.  One day, you are fine; the next, exhausted.   Thanks to PE, our family Thanksgiving tradition was turned on its head (I always cook – this year we ate out).  And, I sat out Christmas Eve.

While there are so many aspects to this recovery that frustrate me, I think I get most annoyed by people who feel it necessary to remark about how “good” I look.  Granted, I suppose I do look good for someone who almost died.  Unfortunately, this outward appearance belies the fact that I live with a severe illness from which you can never quite heal.

I’m at the stage right now where I ebb and flow among the five stages of grief and PTSD.  I realize now that most who suffer from blood clots or clotting disorders are like human time bombs waiting to explode.  I’m one of the lucky ones – “disarmed” so to speak – before causing any significant damage to myself or my family.

I hope this luck continues to go my way.  Until then, I will keep hoping, praying and fighting for a cure so that my oldest son and sister (both C-protein deficient), never have to experience what I did.

Patty is pictured above (left) with her sister, her guardian angel, at her side. Be sure to connect with Patty in the comments below. 

Thank you, Patty, for sharing your story with BCRN.

Comments

  1. Janne Butler says

    Thank you so much for your story, Patty- It was really helpful to me. Several weeks ago I ended up in the hospital with a DVT in my leg- it broke off a huge piece that headed straight for the middle of my lungs- a huge PE. I’m having difficulty with friends who think I’m okay now- because nothing shows. I hope to share my story soon. Thanks again! Janne

    • Thank you for being here Janne! We are happy to welcome you to this community. If you ever want to share your story, please do. Also, please look under the Blog Topics (drop-down near the bottom of the homepage) and select A Survivor Speaks and you will find more stories, if you haven’t already. I just wanted to welcome you and say thank you for being here and for reading Patty’s story!

  2. Janne – thank you for your comment. This blog has been very helpful to me during my recovery. It helped me learn that there is life after blood clots, but that life needs to be lived differently. I have found the most important thing I can do for myself is to speak up and let others know when I’m not okay-even if it means taking a nap when guests drop by and letting the rest of my family entertain!

  3. These stories, and particularly yours told so eloquently, bring back so many memories. I have suffered with blood clots and PEs since I was 10 years old–50 years ago! It took me 40 years to become more open about my Antithrombin 3 Deficiency, precisely because I “never looked sick.” I dealt with my feelings, pain and fears silently, letting people guess why I wear such ugly stockings. Now that I’m more open about it, I also realize that my many brushes with mortality have made me a stronger person, less fearful of death and more appreciative of every day. Thank you for sharing your story.

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