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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Your Guide to Compression Stockings

What are Compression Stockings?

Compression stockings are specially designed stockings or socks that apply pressure to your lower legs, helping to maintain blood flow and reduce discomfort and swelling. They may be prescribed by your doctor for conditions that cause poor blood flow in your legs, such as varicose veins (swollen and enlarged veins), venous leg ulcers (a sore, damaged area of skin that takes weeks to heal) and lymphoedema (when your body’s tissues swell up painfully). They are often also prescribed as part of follow-up and ongoing care after diagnosis of DVT to help reduce swelling, increase blood flow and regulate pain.

Why Wear Compression?

Compression therapy is important to recovery from DVT because it helps to slow the progression of vein disease and promotes a stronger circulatory system by supporting weak or wavy (also known as incompetent) veins and valves and accelerating blood flow back to the heart. If you have a DVT, it is recommended that you wear compression stockings for up to two years after your DVT and in some cases, for the rest of your life to promote good circulation and help prevent Post Thrombotic Syndrome (PTS).

Recent studies have indicated that wearing compression may not be as beneficial as once thought in preventing long-term problems after DVT, although many medical professional have concluded that more research is needed.

What Kind of Compression to Get

Medical grade compression stockings come in a variety of compression strengths (known as mmHg), depending on what you need. Be sure to discuss your situation with your doctor to get the right compression for you. The grades include:

  • 15-20 mmHg (Mild) – Generally for mild spider veins, slight varicose veins, achy legs.
  • 20-30 mmHg (Moderate) – Generally for leg fatigue and heaviness, moderate spider veins, pronounced varicose veins.
  • 30-40 mmHG (Firm) – Generally for severe varicose veins, post sclerotherapy and prevention of post-thrombotic syndrome.

Get fitted! Compression stockings have graduated pressure, meaning the pressure is strongest and the ankle and decreases as it goes up the leg. It is really important to get fitted by a professional for the correct size of compression stockings. A Certified Fitter (found at medical supply stores and some pharmacies, call ahead to ask about specifics) measures your calf and ankle sizes and also the length of your leg to make sure you have the right size to maximize compression benefits. Try to get fitted as early in the day as possible before swelling increases.

Compression stockings come in a variety of basic colors including beige, black, navy, sheer and nude. They also come in thigh-high, knee-high, waist-high and open-toed (which I love to wear in the summer!).

Where to Buy Compression
  • Medical Supply Stores (i.e. places where prosthetics, orthotics, wheelchairs, etc. are sold) – Many insurance companies will cover or supplement the cost of compression stockings if they are ordered through a medical supply store so I recommend checking there first. Most, if not all, medical supply dealers require a prescription from your doctor so be sure to ask for one. Also, check with your insurance ahead of time for a list of pre-approved dealers in your area. If insurance does not supplement your stockings, you will most likely pay full price at a medical supply store.
  • Chain Drug Stores/Pharmacies (i.e. CVS, Walgreens, Discount Drug Mart, etc.) – Pharmacies and drug stores are a great option to look for compression stockings because they often offer a less expensive selection of compression stockings.
  • Hospital Pharmacies – Many physicians will prescribe you a pair of stockings before you are discharged. Ask if you can return to the pharmacy to get a new pair in the future.
  • Online – You may be able to purchase compression stockings online (especially novelty ones, like colors and patterns!). Just be sure if you are purchasing from an online retailer, you are still getting the right grade compression for your needs. A quick Google Search should turn up a variety of fashionable compression stockings.
The Cost of Compression

Compression stockings are not cheap. Generally, you can expect to spend anywhere from $29-$110 per pair. Many of the drug store stores offer an “economy brand” of stockings that are in the $29-$40 range. Stockings ordered from medical supply shops range from $60 to upwards of $110. The cost of compression stockings vary depending on the length (thigh-high, knee-high or waist-high); material; brand and whether or not your insurance offers any coverage for compression stockings.

Medical Compression vs. Sport Compression

It is important to note there is a difference between what are known as medical-grade compression stockings and sport or recovery compression stockings. Runners and other athletes sometimes use compression socks to increase blood flow during exercise, which some think may reduce soreness, increase endurance and performance, stabilize joints, activate blood flow and increase coordination, although the research is not conclusive on this stance. Examples of sport compression stockings can be found from CEP and Zensah and range from $40-$60. Athletic compression stockings are not as pressurized as medical grade stockings and may not be suitable for your recovery needs. 

What to Expect

Compression stockings take a little while to get used to and can seem painful or even cause a burning sensation when first wearing them. As with many things dealing with recovery from DVT and PE, give your body a chance to adapt and a chance for them to start working.

Compression stockings may be work on one or both legs. You should expect to replace them every 3-6 months depending on how often you wear each stocking or pair of stockings.

Helpful Hints
  • Wear your compression stockings when you are going to be sitting and/or standing for long periods of time (i.e. at work – sitting or standing).
  • Put your stockings on as soon as you can in the morning when swelling is minimal and they will be easier to put on then.
  • You do not need to wear your compression stockings when you go to bed or if you are going to be lying flat. Blood flow is optimized when you are lying down so they are not needed. Your body actually needs a break from compression at some point and nighttime is the perfect time to take one.
  • Rotate your stockings (if you have more than one pair) for maximum wearability.
  • Be sure to follow the packaging instructions for washing your stockings. Contrary to what you may think, many types actually suggest machine washing and drying to extend the life of the stocking.
  • Many medical supply stores offer additional products to assist you in getting compression stockings on, for example, if you are struggling or do not have a lot of strength to pull them up.
  • Wear compression stockings when you are travelling (a long flight or car ride) to increase blood flow and reduce the risk of DVT.
  • You don’t have to have a DVT to wear compression! People who primarily sit or stand during the day can wear compression as a preventative measure to decrease the risk of DVT.
  • Wearing compression stockings can be damaging to your self-esteem because unless you wear pants and closed-toe shoes, they are not easy to hide. I’ve been wearing them in spite of my self-esteem lately and decided I am proud to show I am a Survivor.

 

Reader Writes In. Do you wear compression stockings? Why or why not? What kind do you wear? Have you noticed that compression stockings help or hurt you?

There is hope for healing and you are not alone,

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A Survivor Speaks: PE, Take Two by Juli Keller

I have suffered two Pulmonary Embolism (PE) events. The first, in April of 2003, was about 4 weeks after birthing my son. That evening. I went from trouble breathing to pain in my lower right side and back. The next day, I went to an urgent care physician who diagnosed me with a pulled muscle and put me on pain killers. That was that and after two weeks on painkillers, all seemed better, or so I thought, until my body decided to replay the previous occurring events six years later.

It had been a week since I felt like I had pulled a muscle in my right side/lower back again. As the day went on, I developed a very random cough. I did not have chest congestion or a tickle in my throat, just a spontaneous and annoying cough. I didn’t feel “bad” at the time, but for some reason I started writing instructions for my co-workers on how to finish a couple of my projects. Little did I know then, I was experiencing what is called a “sense of impending doom,” a common, but little known, symptom of PE. That night I went to bed but woke up in the middle of the night with one thought on my mind. . . .Would I know if I was dying? As I pondered this thought I became short of breath and had more pain in my back.

In the morning, I went to to my Primary Care Physician (PCP) and was diagnosed with bronchitis/borderline pneumonia. I was given a prescription for pills and an inhaler. My body instantly reacted to the inhaler, but not in a positive way! I was certain I was going into Cardiac Arrest. After doubling over, I mustard up some composure and went outside to catch my breath, but I couldn’t. I don’t remember this part, but my kids say I crawled up the steps and on to my bed which is when they decided to make the call to 9-1-1.

At 11:30 in the evening, ER doctors were going to release me with a diagnosis of pneumonia, but since they had me hooked up to an IV already, the attending physician decided to take a closer look at the pneumonia area by doing a CT Scan with contrast. Less than five minutes later, I had about six doctors and nurses at my side; one injecting me in the stomach and the others hooking me up to what seemed like a million machines. I was told shortly after mid-night on April 1, 2009 that I had suffered multiple (too many clots to count) PEs in my right lung and that they had to do what they could to dissolve the clots as soon as possible to avoid killing off more of my lung…. More of my lung, what?!  This is when they discovered my last pulled muscle in 2003 was also a PE event. I don’t remember much of my hospital stay other than going in and out on people in the middle of conversations (I felt so rude). The weeks to follow were dreadful – doctor appointments, not being able to walk more than a couple of feet without feeling like I was going to pass out and major guilt for surviving after researching statistics. I couldn’t understand what made me a better mother than others who lost their lives….they should still be here for their kids too and with that, PTSD kicked in.

My message is this:  Listen to your body and mind. Demand a CT with Contrast* if you have symptoms of PE. I should have died in the hospital that night and had they sent me home, I would have died in my sleep that night. A CT with Contrast Scan saved my life and could save yours as well.

Life today is not often a walk in the park. Like most other PE survivors, I have both good and bad days. At 42 years old, that is an awful truth to voice. I have days where I can barely function, but find a way to push on through, not at 100%, but I make it (and at the end of those days I ask myself how the hell did I just pull that off?). I take on my bad days silently without much complaining because I do not want pity, I do not want people to be afraid of me, and I also know that most people do not understand or accept the continued challenges we survivors face. I have learned to live with the guilt of survival, but it still resides within me.

As for the good days, thank God for them! I use them to the fullest of my ability to take in and enjoy everything and everyone around me. My kids have always been patient with my new ways of life and my son (the youngest of them, now 11, who gets blamed by his sisters as my favorite) is so in tune with my days that it scares me a little. He thanks me for almost everything; including his dinner every night, he offers me the last of everything and on those bad days he is right there kissing me, hugging me, asking if I need anything and if I will be okay. He reminds me often that he loves me and sincerely apologizes for making tough days tougher, if he has. So much for such a young soul to deal with, but he is truly an amazing light in my life, he is definitely my favorite. . .(and only) son. 😉

The fact is few will care enough to notice us, most will not try to understand us and some will even slight us, but we are survivors and when all else fails we have each other.

*Editor’s Note: A computed tomography (CT) scan uses X-rays to make detailed pictures of structures inside of the body and is most commonly performed at the hospital (versus a doctor’s office or Urgent Care setting). In some cases, a dye called contrast material may be used, thus resulting in a CT with Contrast. The dye is administered usually via IV or mouth and makes structures and organs, such as the chest, lungs, abdomen or legs, easier to see on the CT pictures.
Thank you, Juli, for sharing your story with BCRN! Connect with Juli in the comments below.