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.
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Many thanks to Sara for starting this post, it feels like i made new friends. And to Doroth Faulk, your story was very touching as well as the rest of shared stories by many. I was prepared to take my medicine (so to speak) and realize my recovery would take months.! Well my PE was oct 9, and here it is dec. 3 and im up and doing all my house work, (little each day) shopping, driving, etc. and playing bridge on line for couple of hours. How ever i took some one advice and dont over do it, rest every 3 hours or so. at 78 years old, i amaze myself.!! I have more energy now than all the past 4 years. However i contibute that to doctors realizing that my iron level was 10, and put me on iron pills twice a day. Even when i was in hospital, (I have Kidney Renal Disease, Stage 4) and my Cerum level dropped to 2.8, meaning Dyalsis time, i stayed calm and put faith in God and the Doctors, and after many ivs,5 the Cerum leverl came back to 2.0. Also they ajusted some of my meds. Again im very grateful for this post, and other testment they have posted thanks all for you support mreeves72@msn.com And mosty Sare
I am a 20 year survivor of both Deep Vein Thrombosis and Pulmonary Embolisms. I am blessed to be alive due to the support and love of my family and friends.
Thank you for sharing, Karen. We are so glad you are here! Take care.
Hi Marilyn! Thank you so much for your kind words and also for reading Dorothy’s story.
I also thank you for sharing your story – it is great to find out more about you! You sound like you are doing well post-recovery and your bright spirit shines through in your words. That positivity is infectious and I thank you so much for sharing it here! It is wonderful to connect with you. I am glad your levels are evening out, and it sounds like you are feeling well after your PE.
I will keep you in my thoughts this holiday season and beyond as you continue to recover. Please keep in touch, welcome! I would love to chat again.
Thank you so much for sharing your story. I also suffered a pe because of a long car ride. I thought I don’t need to worry to much about another one b/c all my blood work came back negative for any blood disorder. But reading your story has made me rethink things. Praying you make a full recovery.
Thank you so much for reading. Thinking of you during your recovery as well!
Is it safe to assume Dorothy has a genetic reason for clotting. I am also a survivor. My DVT and multiple bilateral PE’s were due May Thurner Syndrome rather than genetics. I’ve now got a 100 percent blocked left iliac vein and too am on Xarelto. It’s easy not to feel safe after such a life changing event but that will only rob you of the joy ahead. You did survive – now all you have to do is go forward…
Thank you all for your kind words and thoughts. I wanted to address the genetic blood testing for clotting disorders. The testing currently available to determine genetic clotting risks ONLY discovers less than 50 %. Common sense says that because of my strong family history of blood clot disorders, there is a link. I tested negative after my first PE and again after my second one. I would like to advise anyone that received negative results on their risk factors to be diligent in taking all precautions possible against the development of a blood clot. Hopefully more specific testing will become available in the future. Wishing you all a complete recovery. Dorothy
I’m so glad I found this site!
Hi Dorothy,
What you describe is so true! I had two TIA’s, and went through several test, and screens before the right Dr. requested the right test. Then I was diagnosed with Factor II Leiden Genetic Mutation, also known as Prothombin 20210a. So many Dr’s do not have any knowledge about this, thery always say “no you have Factor V Leiden, I have to correct them and tell them no it’s Factor II, or Prothrombin 20210a. My sister went to get a screening and her Dr came back to tell her she was negative for Factor V. I even sent her information on the Prothrombin gene to give to her doctor, and she was still tested for the wrong factors. I am also on Xarelto for life now too.
But you are correct keep being persistent till you get satisfaction, and understanding in the diagnosis that’s given.
Terry
Reading your story has gave me some hope. I am only 30 years old and I was diagnosed 2 weeks ago with multiple PE’s in BOTH lungs. Thank you for sharing. I’m glad I’m not alone!! Merry Christmas and God bless!
Heather, I am so glad you wrote. There are so many reasons for a whole lot of hope. Diagnostic testing and medication to treat DVT and PEs are constantly improving. Survival after these events has increased dramatically. If you check medical journals from years ago, there is not much recorded about recovery from PEs. Not many survived. We are so lucky. Sara has this wonderful web site full of information and an opportunity to share our stories so we don’t feel alone. May this New Year be your best ever! !
I’m so glad I found this site, you have no idea. I’m 17 years old and just yesterday I was diagnosed with DVT running from my knee to my lower abdomen. Reading all the stories on here, has made me realise how lucky I was to reach out to a doctor who almost immediately thought I had a blood clot after telling him about my five days of horrible and excruciating pain, even though most of the common symptoms (such as swelling and redness) weren’t there, and added the fact that blood clots are rare cases in teenagers. There are a few factors that I think may have contributed to Henry’s development (that’s what the ultrasound technician named it when he showed me the big black blob on the screen, it can’t hurt to have a little fun can it?) such as the fact that I had all of my wisdom teeth removed, and also that I started on the pill to treat my acne problems. Anyway, not too long ago I was lying in bed terrified that the clot might move to my lung, heart, or brain. I just wanted to give a big thank you to all of the people who share their stories on here, you lift my spirits up and that’s just what I need right now.
Thank you so much!!
Sincerely, from an anxious teen
Hello! Thank you so much for sharing – you are very, very brave and I admire you. I hope you are feeling better. I admire your courage and strength. Thank you so much for speaking out and helping to raise awareness. I will keep you in my thoughts. Remember, you are not alone, my friend!