I really related to Julie’s story. I too am a two-time survivor of PE. I am also the mother of a son that had multiple PE’s and survived against the odds. I would rather be writing a story about how I am the winner of multiple state lotteries. As Mick Jagger would say, “You can’t always get what you want.”
My first PE was 17 years ago. I had been on a long car trip in a small car. The pain in my right calf on the way home was so severe I felt that it had to be a DVT. I went for an ultrasound the next day and no blood clot was seen. Over the next several weeks my ankle area became more swollen and painful when I walked. My doctors thought it was inflammation in the ankle but none of the medications provided much relief. Then the chest pain started and I began coughing up blood clots. I went to the ER and PE’s were diagnosed. I recovered fairly quickly after a couple of weeks or so. I stayed on Coumadin for several years before I was allowed to stop. My thoughts at that time were it had been a scary experience but now that was all behind me. Now I compare it to being on a kiddie roller coaster. Up a hill and down quickly, smoothly and get off.
My next diagnosis of multiple PEs was on 2/13/2014 at the age of 62. This time I did not have the same symptoms as my initial DVT. I felt tightness in my right calf but nothing else. Several weeks later I started having back and chest pain and became short of breathe. I put off going to see the doctor or presenting at the ED. I thought it was probably nothing, I knew the symptoms of a DVT and I did not have any. I considered the tightness just a pulled muscle. But I felt so lousy. I debated internally, “yes, I would go” then “no, I wouldn’t” to see a doctor. Finally while at work I left my office and walked into my doctor’s office during their lunch hours complaining of chest pain and shortness of breathe. I was worried about bothering them for nothing. I was taken immediately back to an exam room for an ECG.
Dr. Nandini Ramroop came in and told me there were “disturbing changes” on this current ECG compared to my last one. The next thing I know, I was in a wheelchair heading to Baptist Medical Center South Emergency Department where they were ready for me. Everyone at Montgomery Primary Medicine Associates could not have been nicer or more efficient. Here I was again, back in a seat for an unwanted and now scarier roller coaster ride.
I imagined hearing the click, click of gears pulling me slowing up a steep hill while they ran multiple tests in the hospital. When the CT with contrast showed blood clots, it was as if that coaster had been released to drop full speed straight down and before shooting off into a whole run of curves. I could see the difference in the technicians’ body language as they worked around me. My stomach was in my throat as I watched. I was whisked into ultrasound where they found the DVT in the right popliteal, same place as last time.
I had another DVT but this time it came silent. It was hard to call my grown children and tell them about this. I was a mother first. I downplayed the event and reassured them I would be alright. My son Jim lived a couple of hours away (he was the one that had multiple PEs) and he drove to the hospital immediately. He knew first hand He was right there with me in the hospital in no time.
A friend of mine worked with Dr. Narinder Bhalla and called him about my PEs. He had been the principal investigator in a clinical research study using the EKOS procedure for PE. The study was closed now but he continued using the FDA approved process. Dr. Bhalla drove back from out of town to perform the ECKOS procedure (EkoSonic Endovascular System) that used ultrasound transducers and selective infusion of physician-specified fluids, including thrombolytics directly onto the clot. My personal roller coaster had shifted over onto a new track through the cardiac procedure room. I had another climb to make. Again, I received great care and the procedure was a success. I am so thankful for my friend Leigh Burnett and Dr. Bhalla. If this was a story about a carousel, they should both get gold rings.
Afterward the procedure and recovery, I was put into a special cardiac care unit with eight different IVs going at once. No only could I hear the EKOS machinery whirling with my ears but also the clicking and clanking of the ride in my mind. I didn’t know if another hill or corkscrew turn was ahead. I just knew I had to stay strapped in tight and finish.
My daughter Amber and son Mike called me as well as the nurses during that time. Jim visited as well as friends. It is a lot easier being on a roller coaster with others near you!
The worst part of the EKOS treatment – at least for me – was the requirement to lie flat on my back for days while the treatment worked. I have a history of periodic back problems. The pain from my back was horrible after the first 24 hours. I hurt so much I couldn’t eat. The Baptist staff was wonderful and made sure I had ice packs and prescribed medication. They unstintingly gave me both professional and emotional support all during my stay, especially my nurse Billy. Billy, you rock!
After I was discharged, I thought I could get off the roller coaster. But I was too weak to do anything at home. Mike and his family drove down from Rhode Island to take care of me. Under their care, I began to feel better and was able to eat and regain some strength. I tried to return to work part time after two weeks but was just too exhausted after an hour or two. After about 2 or 3 weeks I was finally able to go in part time. Within two weeks after that I was back at work full time. It was one of hardest things I have ever done physically, mentally and emotionally.
If you think age doesn’t matter, it does when you get sick and your body has to recover. Is my life back to pre-Valentine’s Eve 2014l? No and I don’t think it ever will be. My right foot and leg remain larger than my left. I get pain in that leg after a few hours in the same position (lying down, sitting up or walking). When I talk I run out of breathe before I can finish a long sentence.
And my personal bump in the track, anxiety. When I feel tightness in my chest I worry that it is not heartburn but another PE. I don’t like running to the doctor since I really believe they will do testing and find nothing. So I wait and see. The last time I did that, it almost cost me my life. I think this is the worse part of my recovery, how frequently I have similar symptoms. I am on Xarelto and know that the risk of a blood clot is low. But it’s not non-existent. So that roller coaster has never stopped in my mind. My chest hurts, bump, my leg hurts, bump, bump my ride goes. And I wonder will it ever stop so I can get off?
I am so grateful for all the hard work that goes into this web site devoted to support and information about PE’s and PE survivors. Thank you.