I am a Survivor of Massive Pulmonary Embolisms

pulmonary-embolism-1-728before-and-after-this

My doctors told me I was lucky to be alive. My family told me they loved me and most of my friends told me nothing except, “Get well soon.” I told myself that for all intents and purposes, my life might as well be over and it would never ever get any better than it was during those initial weeks and months of recovery. Everything hurt, everything was hard, I couldn’t do anything that I loved and to top it all off, no one understood what I was going through. No one understood me.

When I suffered from a PE on Father’s Day, June 16, 2014, it was completely unexpected and unlike anything I had ever experienced before. Thinking back,  it actually started two days before. I woke up with a strange and out of place feeling in my right breast. It felt like a little inner poke or a little lump. It did not feel cardiac, more muscular, but still out of place. Since it was on my rights side, there was no immediate panic and I simply tried to rub it out over and over again.

The next day, I felt stabbing pains in my back on the right hand side under my rib cage, on my right clavicle as well, and the pain got worse every time I took a breath. A gripping feeling in my right neck added to my discomfort.  Jim drove me to the Urgent Care.  It took awhile to get back to be seen. Blood pressure was through the roof. Plus they kept asking, “what level is the pain, 1 to 10”. I kept saying 5 to 6, I have a high threshold for pain. I know it was the worst pain I have ever felt in my life, but I also know my brain has repressed that exact feeling. They immediately did a test for clots, came back positive. They then immediately gave me a CAT scan, which showed definitively that I had pulmonary emboli (PEs). Multiple blood clots were detected in both of my lungs.  I kept asking them, how many and would give them a number. Started with 20, then 30 then 40….kept going up by 10’s. I stopped asking at 50 in each lung. They kept saying, “More. More than we can count”.  They put me on pain meds via IV in the Urgent Care. I was immediately transferred to the Cardiac care unit at the Virginia Heart Hospital by Ambulance. I was then started on blood thinner injections and was in the hospital for 6 days.  From what I understand from the Doctors, I shouldn’t be alive. They kept using ‘miracle’ as a term of why I survived. Let me tell you, that unsteadies the mind like nothing else!

I was sent home with instructions on how to give myself daily injections of Lovenox blood thinner.  You have to inject Lovenox into your belly! That was pretty painful and caused a lot of bruising. I was on the injections for over 3 weeks, It took that long to switch from injections to warfarin and get my INR up to 2.0.  They finally took me off, as I was developing an allergic reaction at the injection sites. They had never seen anything like it before….in an a sarcastic way to cope, I said, “just stick with me, I’m sure there’s more to come”.

After being released from the hospital, I spent months re-learning how to walk and move without pain or becoming extremely breathless. Over the next year, I improved, but have many step backs and suffer from back pain and loss of breath even doing the easiest tasks. They still do not know where or how I had so many in each lung, so I will be a Warfarin user for life.

Today, I handle pain differently (and I used to have a high tolerance for physical pain), in that mostly I can’t handle it. The slightest thing hurts and sends me into tears or destroys my focus. The nurses in the hospital swore to me that surviving blood clot in the lung was more painful than childbirth. I had more than “A” clot. As I think back, It’s still not real, something like a dream, but not.

I was not prepared for the physical pain and long process of recovery. I was especially not prepared for the emotional and psychological burden of such a traumatic event. Every aspect of my life was changed as a result of surviving a blood clot. I was not prepared for the financial, emotional, physical and emotional fallout. I already didn’t feel good and on top of it all – I lost it all. That is not something one can easily rebound from.

It has been a very long climb up the Hill to health, and I still have a very long way to go.  I get very upset thinking about how healthy I was when I was younger, and today I’m the exact opposite. It’s hard to come with terms with that. Right now, I’m on at least 12 different medications (not all PE related) as I have migraines, am deficient in Vitamin D, have Diverticulitis, major Acid Reflux, and while in the Cardiac Hospital I was also diagnosed with Fibromyalgia..as if I needed more to be wrong with my health. With all my medications and not being able to move around much at all, I have also put on more weight, a lot more. That adds to my emotional and physical well being. I have found that weight gain is common after blood clots. While I know I’m not alone, it doesn’t help.

One-half of clot patients will have long-term complications and one-third will have a recurrence within 10 years, which is perpetually in the back of my mind and terrifies me. Among people who have had a dvt, one-half will have long-term complications (post-thrombotic syndrome) such as swelling, pain, discoloration, and scaling in the affected limb. Some will have open sores in the affected limb, known as ulcers.

I feel truly lucky to be alive and grateful for the life saving care I received from all my doctors, nurses and physical therapists at Virginia Cardiac Hospital  But, most important, I am grateful for the love and support of my family and friends over the past year, especially Jim for without his love, understanding and help I could not have made it through!!.

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