Surviving Two DVT & PE Episodes by Victor Zarate

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The first one was in July 2011 after a long car ride from Colorado to Florida.  I drove without circulating and developed a DVT in my right calf.  It was sore for about two weeks (I never go to the doctor), I had no clue what was going on. One night soon after, while going to bed, I hurt my back.  What I didn’t know was that what actually happened is that the clot in my leg moved to my lungs.

I waited a couple of days and one day at work I just didn’t feel right.  So, I called my wife and said that I was going to go to urgent care to get myself checked out.  I went there and everything checked out okay.  The doctor said just in case I should go and get an ultrasound done on my calf the next day.  So, I made the appointment for the following day.  At the appointment the technician said that she couldn’t tell me if I had a clot or not and said that she would just go get the doctor if she found one.  It turned out that I had a clot the full length of my calf.  The doctor said that I should go to the ER right away.  I went there and the doctors begin to give me Lovenox and a Heparin drip via IV.

As the ER doc was leaving my room she said, “By any chance do you have any chest or back pain?”  I said come to think of it, I do have some back pain.  She said let’s take a CT scan just in case.  By the way….I’ve come to hate CT scans with contrast with a passion.  Soon after the CT scan a bunch of people, nurses and doctors came into my room with a sense of urgency.  I was diagnosed with multiple bi-lateral pulmonary embolisms.

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I had no clue what that was and just tried to enjoy my time in the hospital since I was going to be there for awhile.  According to the doctors I had a very serious condition and I was a very atypical PE patient since my O2 sats remained at 99 the entire time.  I stayed three days in the hospital and took two weeks off of work.  I went back to normal life, except the Coumadin therapy of course.  In fact I went back to exercising.  I ran in a few 5K races and even in October 2011 went for a 26 mile hike on the AT while still on Coumadin.  I had no clue how serious that could have been if I were to have an accident.  After six months of Coumadin the doctor said I should be fine to get off the Coumadin and then  have some blood drawn to test for blood clotting disorders.  All the results came back negative.  Great news!  No more Coumadin.

The second one was much different.  It happened in January 2014.  I again had a sore calf.  This time it was the left side.  I had been exercising and I just thought that I had a sore calf from straining it.  I noticed that I was a little out of breath going up hills and stairs.  So, I decided that I was going to get in better shape.  I was so out of breath that it was hard just to walk home from work up a relatively small hill.  I went to work one day and I noticed that I was having a hard time breathing.  So much so that I couldn’t even finish a complete sentence without having to take a breath.  I knew something was wrong but I didn’t know what.  So, off to the ER again.  I walked into the ER everything was looking good, O2 saturation was good while resting, heart rate perfect and blood pressure a little high.  The doctor said that I might just be having some anxiety but that since I had DVT/PE history they would do a CT scan.  Long story short I was diagnosed with a very large saddle PE with multiple bi-lateral PE and a DVT that was the whole length of my right leg.  This time I was in trouble big time even though I was feeling well.  I had to be flown flight for life to the hospital.  Upon arrival to the hospital, I was informed that I needed to have open heart surgery immediately.

After being there for a couple of hours the doctors came back to me and said that since I was very stable that they should wait to do the surgery until the morning.  Morning came and so did the doctors.  A lot of them.  They all were coming to see the “walking dead”.  I should’ve died they all said.  So, they scheduled the surgery.  I signed all the paper work.  Called my mom and my children, my wonderful wife was by my side, and said prayers.  Soon the doctors came back and they decided that I was a good candidate for interventional radiology.  They said it would be risky but that I was a good candidate because I was so stable.  Praise God the angiogram worked!  The catheters that they put in my heart and lungs broke up and dissolved the clots and after another CT scan, did I mention I hate those, I was all clear.  The saddle PE was nearly gone along with most of the PEs in my lungs.  I spent 10 days in the hospital.  Several weeks in a bed recovering because I was so exhausted from just a walk to the car.

This one hit me like a ton of bricks.  I had none of these problems with my first DVT/PE.  None!  I experienced exhaustion, anxiety, depression and fear.  I couldn’t even talk about or watch something exciting without getting exhausted and anxious.  I did not expect this.  It changed my life.  To this day I still have problems with all the above mentioned conditions.  Thank God not all of them at once.  I will be on blood thinners for life.  However, I will say that I am getting better.  Just the other day I exercised with my son.  I walked a half a mile, did some jump roping, squats and lunges.  However, I did very few of all those activities and it wiped me out.  I thought I was going to have a heart attack.

I write all this to say that you can experience all different types of complications from DVT/PE.  I will say that you have to keep fighting.  Don’t give up.  That fact that you survive these awful problems means that God has some plans for you still.  Listen to your doctors.  Don’t be ashamed of taking medicine to get through the PTSD.  It is God’s grace that we have these medicines to help us.  I hope my story helps someone out there and that we all can have hope that things do get better over time.  It’s the waiting part that is hard but we have to be patient.  I’m speaking to myself as well.

God bless and I hope you all have quick and easy recoveries.

Thank you, Vic, for sharing your story! You can connect with Vic on Facebook

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A Survivor Speaks: Lucky Two Times by Dorothy Faulk

 

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.

Thank you, Dorothy, for sharing your story with BCRN!

A Survivor Speaks: Blessed to Be A Survivor by Karen

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I hope when you read my story, you will become more knowledgeable and aware that Deep Vein Thrombosis is a silent killer and the suffering that comes from Pulmonary Embolisms is a real thing. There are other diseases that are so much in the media, it’s beyond words. But, those of us who have suffered from these diseases live life to the fullest because it is a life changer – and one that is all too often unheard of. When the first clot happened, I literally was in shock. The words “Why me?” came into play. Then when the two occurred, once again, I said to myself “Why me?”

I was first diagnosed with Deep Vein Thrombosis in October 1994 along with my first Pulmonary Embolism. Then, in both November nd December 1995, I had one again, which brings the total number of Pulmonary Embolisms to three in one year. I had the Greenfield Inferior Vena Cava Filter implanted into my abdominal wall in January 1996. All of this was happening while on active duty with the military. I thank God daily that I have survived this long ordeal with Deep Vein Thrombosis.

The first blood clot should have done me in, but it didn’t. I have three things that have kept me living life to the fullest: Faith, Family, and Friends. Without these things, my life wouldn’t be complete. I am blessed to have my husband Derrick, pictured with me above, in my life. We are celebrating 10 years of wedded bliss this coming April 2014. I can’t live my life without him. It is his loving support of having to deal with this disorder that makes the recovery much easier to deal with. This is how I have not only recovered but have learned to deal with it for the rest of my life. Unfortunately, I’m on the medication Coumadin for life. I get my blood tested on a monthly basis for which I have learned to just deal with the process for the rest of my life.

In closing, I am praying that someday there will be a fundraiser or more awareness about the silent killer known as Deep Vein Thrombosis and its counterpart, Pulmonary Embolism. I am truly blessed to be a survivor because when the first blood clot happened, I knew that I had to fight for my life. And I did.

You can connect with Karen in the comments below.
 

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