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.
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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We all have to be careful with CT scans, unless absolutely necessary. I have read where they emit 200 to 500 times the amount of radiation as a chest x-ray. Sometimes you don’t have a choice. Right now, for me, it would be elective, more our of curiosity more than anything else. It takes a lot of detoxing to get rid of all that radiation.
You had quite a journey. It shows the symptoms are not the same for everyone.
I too had a saddle embolism and the symptoms were very similar to yours. I got the embolism on a 4hr plane ride. I walked around with it for 5 days before going to the ER. In my case they put me on blood thinners. A CT scan a month later showed that the saddle embolism was gone. That was 2 1/2 mos. ago but I still have not recovered my aerobic capacity. I was able to cycle 2 miles this past weekend but I have a long way to go for complete recovery.
Dear Vic: your last paragraph spoke to me and had me in tears. I have a long recovery ahead of me from a PE. By the time it was found in my right lung in March, I had been living with it for three years. I kept seeing different doctors, saying, “I feel fine, but I can’t breathe when I do any kind of exertion, even walking.” I just fell over one day in March and ended up in the ER, unable to breathe. CT scans had been done previously but not an angio/CT and not with the new dye that is now available. I had a very long, stringy clot. I was hospitalized for one week, sent home with Coumadin and no information on either the medicine or recovery. I’m now hooked up 24/7 to oxygen and using a walker. I can’t go anywhere. My husband is my caretaker. I can’t dress myself or anything, I am so weak. I get discouraged so your story helped me immensely. I do not have any words of wisdom except to try to be glad to wake up every morning and to have patience, which is very very hard to do.
me so much. Thank you.
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Thank you Vic for sharing your experience I finished in tears as well! I too am recovering from DVT/Bilateral PE in 2015 which was almost a near death experience. My story begins about 2 weeks after hernia repair surgery with left knee pain, did the right thing notified MD had STAT outpatient dopplers on both legs negative so he chalked it up to my severe osteoarthritis. Now a week later I’m preparing to move packing dishes in boxes, but can’t walk more than 10 steps without sitting down just winded hmmm something is definitely WRONG! MD notified asap and I was instructed to head to ER. Knowing the ambulance in our area wouldn’t take me to the hospital my MD practiced at I somehow made it to my mom’s vehicle then we’re zooming to the Texas Medical Center.
I had stable blood pressure, O2 saturation 98% without oxygen, but my telling sign was elevated heart rate 120s up to 140s with movement. Off to CXR/CT Scan only to have my thoughts of possible asthma exacerbation or pneumonia obliterated by the words YOU have Large Bilateral PE they looked like huge grapes hanging on a vine. I was started on Lovenox and off to Telemetry floor with pending Echocardiogram. The next morning at 11 am echo tech and orientee arrived 1/2 way through the test I knew something was wrong when she told him he’d have to practice another day, but of course she won’t tell me what she found. It wasn’t long before my room was filled with white coats and I’m being told stop eating, we’re transferring you to ICU for closer monitoring and prepare for surgery. Wait a hot minute my hopitalist just said I was going home in 2 days on Coumadin and the Coumadin Clinic appointment is already scheduled.
Needless to say a bed in ICU wasn’t readily available so my nurse kept looking in on me every 30 minutes and if I moved she was running cause heart rate kept shooting up. By 1 pm I’ve spoken with my surgeon and a cardiologist instead of surgery going to attempt catheter directed thrombolysis at 6pm. Notified family and friends of my echo results and pending procedure. By 4 pm I’m leaving telemetry thinking finally an ICU bed is available nope off to Cath Lab my time was moved up due to right sided heart failure which could lead to cardiac arrest. No time to call my family so informed MD do everything to save me they’ll be here at 6 pm looking for me It took almost 3 hours on the table, but thankfully it was an uneventful procedure then the following day repeat doplers found extensive DVT in my right leg.
Now onto Heparin and Coumadin, oxygen therapy, physical therapy, and assist with bathing, eating, etc. cause I have been classified with Stage IV Heart Failure. Fortunately got enough strength back to walk with a walker and feed myself which allowed me to be discharged home after 10 days. After 6 mos of Coumadin risk factors including surgery, being overweight, and use of birth control pills were considered the reason for clots so instructed to lose weight, never ever take oral contraceptives again, and since tests were negative for hereditary risk factors or autoimmune disorders I was able to stop Coumadin yay!!!
Boy was I wrong…..
Sigh diagnosed with recurrent PE in July 2016 which is probable chronic thromboembolic pulmonary hypertension (CTEPH). I now have anticoagulation therapy indefinitely, added Adempas to the medication mix, require routine echocardiograms/right heart catheterization to assess heart and lung function, and will be evaluated for pulmonary endarterectomy (PTE) surgery to remove old clots that probably didn’t dissolve from catheter directed thrombolysis procedure in 2015.
But like Victor and so many others have said, He has a purpose for each and everyone of us and through it all I know I’m blessed to be here to share my story. Believe me I’m not saying it is easy most days I’m overwhelmed thinking I’m 43 will there ever be an end in sight and other days I get sad, frustrated, and angry. But I walk by my faith and know tomorrow’s another day I choose to be resilient and continue this fight because I won’t let blood clots win!