A Survivor Speaks: I Am A Mother by Lynda Jurva

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My name is Lynda. I am 35 years old and the mother of 4 beautiful amazing children. My story starts July 28th 2014, one of the happiest days of my life. My precious baby girl was born. As a mother of three boys, this was very exciting! She decided to come four weeks early while we were away vacationing at a cottage. Little did I know that her coming early probably saved both our lives. She is my angel. I felt great after my delivery everything was going smoothly. Two weeks later, I started to get pain in my leg and butt check, which felt like I had pulled a muscle. I joked with my husband saying how in the world did I manage to pull a muscle there?! As the days went on, it kept getting worse so I would ice it and would get a little relief. By Friday (after having this pain since Monday) the pain had moved to my left thigh and was so bad I could barley walk. I kept pushing myself thinking it was just labour and delivery related, and I even when to the mall with my sister that night! I kept telling myself to not be such a baby and just walk it off. When I got home and changed for bed, I noticed my left leg was purple. I called my husband to show him, he started to look things up on Google and we decided it was was just pregnancy related. I went to bed feeling really scared. I was crying and felt like I may die. I have never felt that way before.

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I moved my baby’s bassinet tight against my bed so I could still feed her through the night without getting out of bed. Every time I would wake, my left leg felt heavier and heavier. In the morning, I could barley get out of bed my leg was so heavy and painful. When I looked down at my leg it was not only purple, but at least twice the size! It was then that my husband and I decided it was time to go to the Emergency Room. I had a blood test done that showed I had a high chance of having a blood clot. I thought that can’t be, its probably just a pinched nerve or something. I was sent for an ultrasound and I will never forget what happened next. I was waiting for the results on a stretcher with my husband and three week old baby and the doctor came in looking very shocked. She said, “You have a very large blood clot.”

I instantly felt terrified and started crying. The doctor said, “You have a very rare severe type of blood clot called Phlegmasia cerulea dolens.” It was a solid blood clot from the back of my knee to the middle of my stomach, They said they needed to transfer me by ambulance to a hospital in Toronto, about one and half hours  away for a special procedure. I was later told by the ER doctor when she came to visit me in the hospital that when the vascular surgeon saw my ultrasound he said there was nothing he could for me and they needed to get me out of there right away.

It was lights and sirens all the way there. I was so scared. I am a mother, I have a newborn baby to take care of. I just couldn’t believe this was happening to me. I had a wonderful nurse that went for the ride with me that tried to keep my mind off of what was happening.

Once I got to the new hospital, I was told that there was also some clots in my lungs. My heart rate was 160. The surgical procedures I had was Balloon angioplasty of left femoral, external, common iliac veins, a catheter directed thrombolysis and IVC filter insertion. I spent the night in ICU. In the morning, I found out they had to stop the catheter medication as my body had a rare reaction to it and I almost started bleeding internally. I was told I had to start walking if I wanted to keep my leg! It was so painful I could only take two or three steps and then have to get back into bed.

I spent two more nights in that hospital and was then transferred to my local hospital to be closer to my family. I spent a total of two and a half weeks in the hospital trying to manage the pain, get rid of my fever, be able to walk again and have my filter removed. When I was released, I could only walk with a walker and had to use a tub bench to be able to take a shower. I couldn’t be left alone with my smaller kids as I couldn’t properly care for them.

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It has been almost three months now and I am proud to say I don’t use a walker anymore and all the swelling is gone. I have to wear thigh high compression stockings for the next two years and take Warfarin for six months.  I did find out that I have Factor Five Leiden. I do still get scared with any ache or pain, and I am waiting for the day when I’m not scared of my blood anymore. I am so happy and thankful to be alive! I survived what many don’t.

What I would like people to take from my story is that pregnancy can cause clots and to not ignore the signs your body is giving you.

Are you ready to blossom?

Thank you, Lynda, for sharing your story!

Stop the Clot Chicago 5K – Run, walk, donate and make a difference! By Christina Martin

 

Christina Martin Survivor Speaks

About 3 years ago I started my journey as a “real runner”.  I have always liked to run but very short distances. In high school I ran 100 meters and in college I would jog to keep my weight down.  I always watched the larger marathons on TV from Chicago, New York and Boston but thought…yeah, that is not for me.  In October 2013 my best friend Manu and I watched the Chicago Marathon on TV. I cried because I always wanted to do it but thought I couldn’t, it’s 26.2 miles. As I sat there in self-pity and tears, he stared at me with a blank look and walked out the room and said “just do it” for crying out loud.

LOL! That was the trick. I thought why not. If I fail I fail but at least I tried, then I could go back to say “I told you so”.  After many weeks of researching races, shoes, training books, and running gear I signed up for my 1st marathon 2011 Huntington Beach, Surf City on Super Bowl Sunday.

Manu was right by my side ordering movies on TV to get me inspired, buying racing gear and listening to my stories about how many miles I ran, how cold it was to train in Chicago winter, how bad my feet and knees hurt, and all the gritty details. Manu and I made plans to fly into LAX to make it happen. On Feb 6, 2011 I was officially a marathoner at 4 hours and 54 minutes. I remember crossing the finishing line and seeing Manu’s smiling face. I was so so happy. That horrible Charlie-horse since mile 23 was gone, I didn’t feel nauseous and the cuts from my race day shirt on my back didn’t feel so bad…it was officially the happiest day of my life. Manu supported me and made my dreams coming true.

Manu continued to support me through 5 more marathons over the last 4 years. As was preparing for Chicago Marathon Oct 12, 2014 (2) days before his birthday when I was informed by Manu’s best friend that Manu passed away from a blood clot. I knew he had issues in the past but he was 36 years young so I didn’t take it that serious.  His last blood clot was misdiagnosed as a hamstring pull and on September 28, 2014 he passed away at the hospital. My heart was officially broken, as my best friend who I love with all my heart went to be with the Lord.

Manu was buried on October 10, 2014. I ran the marathon in his honor on October 12, 2014, the hardest thing I have done in my life. Running with a broken heart is 10X more difficult that running with stress fractures, sore knees and medical issues. Instead of looking for his beautiful face at the finish line, I looked at the heavens and said “we did it”! October 14, 2014 was his birthday. I went to his grave site with my marathon bib and knew that I wanted to make a difference.

I’m hosting the 1st Annual Stop the Clot Chicago 5K on Mother’s Day May 10, 2015. It’s to honor Manu Ajamu Williams. I’m working with the National Blood Clot Alliance, a charity that supports awareness and research of blood clots.

Come run/walk with us this spring if you live in or around Chicago so we can STOP THE CLOT.

To find out more (including registering for Stop the Clot Chicago 5K), please visit: http://www.stoptheclotchicago.com/

The Invisible DVT Symptoms: My Story by Sam DeBrule

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None of the doctors or ultrasound technicians saw my DVT symptoms coming.

I was the only one who felt the pain.

I was a 15 year old football player in peak physical condition. The typical blood clot symptoms just weren’t there. My leg wasn’t swollen. It didn’t turn red, or even feel hot to the touch.

As I went undiagnosed for 6 weeks, my legs took a beating on the football field. The doctors would eventually find what my family had told them was there all along: a chronic deep vein thrombosis that stretched from my ankle to my hip.

My diagnosis came just in time. I’m sharing my story so you never find yourself, or anyone you love, in the same position I found myself. You must advocate for yourself, or risk doctors being blind to your DVT symptoms.

Refuse to take no for an answer

It took 4 trips to the emergency room before I was properly treated for my blood clot.

My clot started with a small muscle pull in my right calf. The pain initially felt no worse than a typical running injury, but quickly morphed into an intense aching pain that I hope to never experience again.

I have a history of blood clots in my family. My father had 2 DVTs and a pulmonary embolism before his 40th birthday. As soon as I told my mother that I was experiencing pain in my calf she took me to a medical imaging office to be scanned for a blood clot. The results appeared negative, and so to did the next 2 ultrasound scans over as many weeks.

Fortunately, my mom refused to take no for an answer. She took me to various hematologists and vascular surgeons, but everyone was thrown off by my unique DVT symptoms. It wasn’t until many weeks later, a 104 degree fever, and a complete inability to walk that doctors took me seriously and discovered the clot.

Had my mother been satisfied with the first or even 4th ‘no’ she heard, I wouldn’t be here today. My clot could just as easily have broken off and traveled to my lungs.

Don’t ignore your pain

Pain was the only DVT symptom I experienced with my first clot.

I was an athletic 15 year old in top physical shape, so doctors quickly shot down the idea that I had a blood clot. I was far from fitting the profile of a sedentary, elderly, post-surgery patient they are used to seeing.

You are the only one who knows your body, and knows how much pain you can tolerate. If any doctor tells you that “you would be in far worse pain if you had a blood clot,” leave the office immediately and find a doctor who takes his/her patients seriously.

Stupidly, I continued to play football with each mis-diagnosis from doctors. I tried to fight through the pain. I am incredibly lucky that my story didn’t end tragically. Don’t be too tough for your own good, or try to find excuses to not make that trip a doctor’s office.

Find the experts

I have permanent vascular damage in my right leg that causes me pain and discomfort every single day.

Had my DVT symptoms been addressed more quickly, I would be pain free. If you begin experiencing DVT symptoms, you will likely be fixated on your pain, or finding treatment as quickly as possible.

Be sure to ask around to make certain the doctor you visit has a better track record than anyone in the area at properly diagnosing and treating blood clots. You’ll save yourself from a life of discomfort.

Editor’s Notes:
Thank you, Sam, for sharing your story with Blood Clot Recovery Network.
Catch up with Sam on Twitter @SamDeBrule. Sam has created a workout program to help others who are looking to get in shape for the first time or maybe get back in shape after a debilitating illness or injury. Sam’s fitness plan is free, completely customizable, you don’t need any equipment or gym memberships and for me, it’s just the step I needed to take with the start of 2015 to take control of my health! All you need to sign up is an email address so check it out today or click below. 
Click here to sign up for Sam's workouts.

Click here to sign up for Sam’s workouts.


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: The Trip of a Lifetime by Lori

In 2010, I experienced pain in my calf, which I thought was a charley horse and ignored for several weeks. When my leg and foot began to swell, my husband insisted I get checked out. I went to a walk-in clinic and was immediately sent to the ER. I was diagnosed with a DVT in my lower left leg. I was shocked! The doctor said it was caused by birth control pills, which I had only been taking for about six months for the hormonal benefits. I spent five days in the hospital, followed by two months of bed rest. After six months, my doctor took me off Coumadin, despite being diagnosed with Factor V Leiden.

Fast forward to February 2014. My husband and I were going to New York City for a romantic Valentine’s Day weekend. The week of our trip, I wasn’t feeling good. I had been working out very hard with a trainer and also tried a new exercise class. My thighs hurt, but I thought I just over-exerted during my workouts and pulled a quad muscle. I got light-headed one time when I got up from my desk at work, but I paid no attention, thinking I just got up too fast.

On Valentine’s Day, my husband picked me up at work to go to the airport for our flight to New York. We parked and started walking to the terminal. Suddenly, I had to stop and rest every few feet. I wasn’t having any pain or shortness of breath, but for some reason, I just couldn’t move for more than a few steps. After what seemed like an eternity, I made it into the terminal. When I did, I had to sit down immediately, as I suddenly could no longer breathe. Someone nearby noticed my distress and called an ambulance. My blood pressure dropped to 75, my heart rate was over 170. I went into tachycardia and was rushed to the nearest hospital.

I had two PE’s in my right lung, four DVTs in my left leg, and my right leg was completely blocked from my knee to my groin. Instead of going to New York City for the weekend, I was now fighting for my life. Due to the amount and severity of the clots, I was transferred to the ICU. After a few days with no improvement, I underwent a procedure where catheters were inserted behind both knees and a clot busting medicine was dripped through my veins.  It didn’t work. My feet turned blue, the nurses had trouble finding a pulse and I was scared. The doctors then went in again and basically “scrubbed” the clots from my veins. I spent the next five days in ICU, urinating blood and unable to move. I finally began to improve and was moved to a regular room, where I stayed for another week while they tried to get my INR to a therapeutic level.

It’s now five months later and I feel pretty good, other than some chest pain and extreme fatigue from anemia. I think about how lucky I am and that I got to the hospital in time. At times it’s overwhelming to think how close I came to dying. I also wonder though, why I survived and others don’t.  It’s hard to not overreact to every ache and pain, but also remember how important it is to get things checked out. It’s a delicate balance. I’m happy to say we finally made it to New York City over the 4th of July weekend this summer! I was anxious about flying, considering my close call but I made it! I don’t like the fact I’ll be on Coumadin for life, but each time I take it, I remind myself that I have been given another day to live and that I’m a survivor!

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

 

A Survivor Speaks: Without Notice by Kimmi

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I never imagined it would ever happen to me, but it did on Oct 27, 2009. A massive bilateral pulmonary embolism happened to me. I remember that afternoon. I had no symptoms, except not being able to breathe. It was a struggle to go from my bedroom to my bathroom without having to stop to catch my breath. I went to an emergency doctor appointment and the doctor thought it was asthma. She gave me a breathing treatment and an inhaler. I went home and got in bed.

Next, I received a call from the hospital to come in immediately for a chest CT with contrast. I did, and after I was finished and on my way home, I got a call from my doctor who said to go back to the ER because I had massive bilateral pulmonary embolism. I rushed back and they were ready for me. Doctors and nurses, all rushing in with oxygen, lovenox shots and IV’s. They seemed to be panicking. I was given Morphine twice. I heard the doctors talking outside of my room, “put her on the pulmonary wing and take her vitals until she passes.” I was given a 30% chance to live.

And I did live….I lived….I survived. I was put on lovenox shots for ten days, then Coumadin. After four months, I was taken off the medications, tested and cleared. I thought to myself I just cheated death. I told myself never again would that happen to me.

But then it did. 

On Oct 27, 2013, I was ready to board the jet to go to see someone, someone that is and has always been my life, besides my son. She asked me to get a chest x-ray because I was having trouble breathing. She could hear it.  I was stubborn, but went to ER hoping to get out fast so I could board the jet.

The doctor wanted a chest CT with contrast because of my PE history. I agreed but asked him to hurry. I had the CT done and waited back in my ER room. The doctor came back pretty fast and he sat and said “Well Kimmi,” and I thought “sweet, I am bailing.” Then the words that crushed my world came out of his mouth, “Sorry, but we are going to keep you for at least five days. You have massive bilateral pulmonary embolisms again.”

I remember putting my hands on my forehead and crying, “No it’s wrong read it again.”

He said, “I can show you.” My head was spinning. What do I do with my son? We are supposed to get on a private jet. The doctor, who was so kind and compassionate, said,  “Kimmi you know you would of died if you got on the jet. You worked in the medical field, you know. You know it, don’t you?”  I said, “Yes, I know I would of died if I got on the jet.”

This time it was worse – the pain, the fear, the constant worry that a clot would pass through my heart and into my lungs again. I am now a lifer on Coumadin. It is harder to keep my INR within range and I still feel pain in my calf that had the clot in it. I still experience shortness of breath and my o2 sats are at 86% most of the time. I am terrified, but I can’t live in that fear everyday. The stress is too much.

I want to say be aware know your body, don’t ignore the signs. Because clots kill, and all of a sudden at that. I am blessed to be here. I pray for those that survived like me, for those that didn’t get the chance too, and for those going through it right now.

I want to thank my very special someone  for saving my life that evening. If not for her, I would not be here today; ALIVE, BREATHING AND LIVING. I love you with all of my heart and soul.

Kimmi (From California to Colorado where the doctors said I could never live)

Editor’s Note: Kimmi is a published author and has written a book of poetry about about life, loss, loneliness, appreciation and love called Layers of my Soul. You can find her work through Barnes & Noble and Amazon. You can also connect with Kimmi on Facebook or in the comments section below. Thank you, Kimmi, for sharing your story with BCRN!

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