A Survivor Speaks: Fighting Factor Five By Jennifer Murnin

Jennifer M Cover (MAY)

In 2008, at the age of 18, I got my first blood clot.  During a weekend away, I began having pain in my right hip which lasted the entire weekend and gradually became stronger.  I tried to ignore the pain until I woke up Monday morning with swelling in my entire leg.  I had no idea where the pain was coming from so I called off work and made my mom take me to the emergency room.  While waiting to see a doctor, my entire leg and foot began to turn purple and swell even more.  Nurses did X-rays on my hips and found nothing wrong.  Eventually, a doctor came to see me and told me I had Bursitis (swelling in my joints).  My mom got me an anti-inflammatory and we went home feeling satisfied that we found out what was wrong.

Later that night my uncle called to talk to my dad about the plumbing in his house.  Fortunately, my family doctor is also my uncle, and because I was not feeling any better, my mom asked my dad to tell my uncle what had happened that day at the hospital.  Without hesitation, my uncle asked my dad to squeeze my calf and bend my toes.  He couldn’t.  The swelling was too severe.  After hearing that and without even seeing my leg, my uncle told my dad that I had a blood clot and needed to get back to the hospital immediately.   Feeling nervous, I asked both of my parents what a blood clot was and they responded, “not good”.  My dad told me to pack an overnight bag which confused me even more and brought on feelings of fear and helplessness.  I did not know how much more severe all of this was going to become.

As soon as I got to the emergency room, I was taken right back to a room where an ultrasound technician was waiting for me.  She asked me if I was taking birth control and I told her I was.  She immediately asked, “Do you take YAZ?”  Again, I responded, “yes” and she told me that day would be the last day I would take it.

As she began to do the ultrasound, she told me it wasn’t a question of if I had a blood clot, but how big it was.  At10:15pm, I was told my blood clot started in my toes and extended all the way to my hip.

I was admitted to the hospital and stayed the night with my mom by my side.  The next morning, around 8:30am, my blood clot was re-evaluated.  It was determined that the clot continued to get larger, and now extended to my belly button.  The doctors’ main concern was because the vein the blood clot was in is a vein that travels to my heart. Because of this concern, an implanted filter could be used to ensure the blood clot did not break off and travel; but it would not get rid of the clot so the filter would not benefit me.

By the afternoon, my uncle decided he would try a treatment that would hopefully dissolve the blood clot; a treatment that he had never tried before.

I think it was at this point when I began to panic because the reality sank in.  I suddenly became aware of how severe and scary this all was becoming.

The next morning I went in for a short procedure to insert three tubes in the back of my leg.  These tubes would pump a heavy-duty anticoagulant through my clotted veins.  Because of the strength of the anticoagulant and the potential life-threatening complications, I began my stay in the ICU.  The doctors told me the tubes could be in my leg anywhere from a couple of hours to a day at most.  While the tubes were placed, I could not sit up.  I could not bend my leg.  I could not really move at all for fear of moving the tubes and causing more pain and damage. Each morning I was taken back down to a short procedure room and had dye shot through my veins to determine if the treatment was working.  One day turned into two, two into three, and finally after five long, fear-filled days, the clot began to partially dissolve.  The remaining settled in between my calf and my toes.  I spent another two days as an admitted patient, scared that the blood clot would get larger and eventually travel to my heart.  As a young college student, eighteen years old, I never imagined I would be scared of dying.

After two more days, I was released with a diagnosis of Factor V Genetic Mutation or Factor V Leiden with DVT (Deep Vein Thrombosis). I went home on the condition that a home health nurse would come to my house every day to draw blood and administer Lovanox (blood thinner) shots in my stomach.  I had to wear a compression stocking that is tight on my leg to help improve the circulation of blood.

Finally after eight terrifying days, I was able to leave and return home.

As I made my way out of the hospital, I realized that I had to relearn how to bend my leg and even walk again.  After eight days, I left a new person – feeling damaged, hurt, angry, and broken.

After weeks filled with many specialist and doctor appointments, I was faced with the reality that my entire life was different.  I was put on a lifelong treatment of Coumadin (an oral blood thinner).  This changed the amount of vitamin k I could intake, the types of medicine I would be able to have, and began to thin my blood so much that a mere paper cut would bleed for five minutes and a small bruise would last for weeks.

I began my sophomore semester of college in the fall, and had to watch how long I was sitting in class.  I had to walk around campus with a bright white compression stocking on.  At the time, I hated that I had to wear it because everyone would stare.  I became angry that my entire life had to change because of a blood clot.  I spent a year or two battling with feelings of self-doubt, pity, disappointment, and resentment. I was dealing with so much while other college students were busy deciding what they were going to do with their Friday night.

It took a lot of time, support, and healing to come to terms with my new life.  I got there eventually.

Fast forward six years and I have now recently made a huge decision that will affect me and my future children and family.

From the day I was diagnosed with Factor V, many doctors and specialists assured me that my children were guaranteed to have the same genetic mutation.  I could not imagine wanting that life for my child or any child.  I did not want my children to wear a stocking.  I did not want them to be forced to get blood drawn every 3 – 4 weeks.  I did not want them to have to be scared of throwing a blood clot every day of their lives.

Because of the many risks associated with pregnancy and childbirth (for me as well as my children) I wanted to avoid the chance of pregnancy and any of the risks associated with it.  After years of contemplating and dealing with the conflicting positive and negative feelings towards the situation, I met an amazing doctor who helped me feel confident and brave enough to make the right decision for me.  I decided to get my tubes tied.  I scheduled appointments with genetic counselors and specialists who provided me with every piece of information they could to help ensure I was making the right decision.  In the end, the support of my family and friends helped me make the best decision I could for myself and my future children.  I followed through on the surgery just three days ago.

I had the tubal on March 21, 2014 and unfortunately threw another small clot in my calf.  When I found the blood clot, I instantly filled up with feelings of fear and hurt.  I was angry that this decision I painfully made was only going to cause more pain and suffering.  I will forever live with this diagnosis and I now had to suffer the consequences of my decision.

The first time I had a blood clot, I was unsure of what was going to happen. Now that I knew what could happen, I was terrified.  Once again, my life could be changed, or even cut short before I had the chance to experience a lot of things that life might have in store for me in the future.

Thankfully my uncle came to my rescue again and saw me as soon as he could.  He assured me that this time the clot was not as concerning.  Since we know how my body reacts, we can solve this problem.  I will now spend the next week receiving Lovanox shots in my stomach twice a day as well as taking Coumadin to help thin my blood and dissolve the clot.

There are many times I return to the “life isn’t fair” feeling, but at the end of the day I am thankful for the amount of support I receive from my family and friends.  I can ignore the stocking I wear every day.  I can deal with the pills I take every night.  I can cope with getting blood work done every couple weeks.  I can survive and thrive knowing that the consequences could be so much worse.  The blood clot and damaged veins are painful and ache each and every day – but at the end of the day I am here, wearing my stocking, and thankful for the life I was given.

Jennifer and her friend, Katie Martin, are doing everything they can to help raise awareness about blood clots and make a difference in the lives of others facing this often devastating diagnosis, including walking on the Stop the Clot team in NYC on June 7, 2014.

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Jennifer and Katie have a fundraising page to raise money for the National Blood Clot Alliance. Please check it out, share and donate if you are able: www.grouprev.com/factorvfighters. Good luck Jennifer and Katie, we will be cheering for you.

 

A Survivor Speaks: You’re Stronger than You Think You Are by Sidney Penner

The day I suffered from my P.E (November 15,2012) was a day I never thought I’d get through. The night before my P.E, I was walking from my college class to my car when I realized I was getting short of breath. That was not normal for me at the time because I was exercising every day and always out running and walking.  The next day I woke up and had terrible side pain. I thought maybe I had pulled something while exercising. As the day went on, the pain progressed more severely.

By the time my mom got home I was in my bed and couldn’t sit and couldn’t lay flat and then I remember a huge rush of pain. I went to the living room in tears, and that’s when my mom told me to get my coat on because we’re going to the E.R. I had never been to the E.R and had never even been to the doctor that much since I was always a healthy girl. After tons of blood work and a chest x-ray, the doctor came back into the room and said they saw something but wanted a better look. They took me in for a CAT scan and then came running back into my room saying, “this girl has an Acute Pulmonary Embolism in her lungs and we need to admit her now!” I remember the doctor telling my mom that if I hadn’t of came in that night, I wouldn’t have been alive. That was very scary to hear when I was only 20 years old. I was scared, because even daily tasks I wasn’t capable of doing. My mom had to help feed me, had to help me with showering, and had to help me get dressed. The pain was so bad I couldn’t do anything for myself.

If I could tell anyone about what happened I would say: I was a healthy and active 20 year old girl who never smoked, never drank, never had sex, had never been on birth control, never had injuries, never took long trips and never had family history of such an illness. This is something that can happen to skinny or big people; old or young people. I feel like there needs to be a lot more awareness for such an illness; it is the 3rd leading cause of death in America.

The one image I can clearly capture from my experience, it was when they sent me to get admitted and they were hooking up IVs and EKG’s and oxygen to me. I remember all the doctors and nurses working and then I remember my mom sitting by me; and I remember yelling at the nurses that I would rather die, just kill me. Then one nurse, who tried to make light of the situation, said “Oh sweetie we have a whole other level for patients who are thinking that way!” He was super funny and made me feel a little better.

Looking back, I think my main emotion was fear that I was going to die. I remembered always waking up to the intercoms of the hospital saying “code blue” and I was thought “Oh my God, is that me? Am I alive? Am I breathing?” It was a scary moment for both me and my family.

The biggest challenge I have overcome with since my P.E. is the fear of doctors, hospitals and needles. I was terrified of all three before my P.E. Every time I’d get sick I’d wait it out. I wouldn’t dare step near a doctor’s office. But since my P.E, everything has changed. I realized that the doctors and nurses are there to help me and keep me calm during such a difficult time. I overcame that fear and this experience has made me fall in love with the healthcare field. Now, I am trying to get into nursing school and become a nurse. I’m not scared of needles anymore, and I’m definitely not scared of doctors.  I was very lucky to be blessed with such an awesome medical team, my doctor and nurses who have helped me so much during this scary time.  I will forever be blessed this has happened to me, and I wouldn’t want it any other way. Because of this I now have my dream career and I’m stronger than ever.

Reading other survivors stories make me feel like I’m not alone with such a scary illness. It also makes me wonder why so many people have this life threatening illness and still no awareness is made. 

I would say to another survivor, to NEVER give up. It looks like a long road right now, but you will get better and back to normal! I was on blood thinners for five months. I was getting my INR checked all the time, and I was always tired and weak. But now, I’m off the blood thinners, I’m getting active again and I’m feeling more like me as time goes by. It’s not impossible and if I was able to make it through, then we all can! Awareness is key.

Connect with Sidney in the comments below or through theese links:
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Thank you, Sidney, for sharing your story and message of hope with BCRN!

A Survivor Speaks: Surviving a Silent Killer….The Whole Story by Lisa

Lisa Cover

A Survivor Speaks: Surviving a Silent Killer….The Whole Story by Lisa Cowan Wells

I always thought of myself as a Mom, Wife, Friend who wore many capes…I was always on the go, shuffling oldest to high school and job.  Then taking both kids everywhere with me while doing errands for myself, house, school, our brewery and night school for me at the end of the day.  I always lived in fast mode…you would think under those circumstances I could be at least a spokesperson for being able to take on anything!

At the end of last year, 2012, I noticed I started having more health issues than my usual, occasional bronchitis, sinusitis, and asthma episodes.  These continued into this New Year, 2013.  I went to the ER countless times so sick and all they did was say it’s your asthma…here is some prednisone, Z-Pak and pain pills for chest pain.  D-dimer was always coming up negative, so they never pushed further to check for clots since my leg was not giving any signs or signals for a DVT and chest just seem to be asthma related issues.  I noticed that every time they were giving me those meds, the usual ones that always worked when it was bronchitis, asthma related issues weren’t working anymore and the pain in my chest, dizziness, palpitations were getting worse…at this point when I would show up at the ER…I just had to be in search of pain meds, I must be addicted.  The last ER visit I had before the BIG ER visit…he sent me home with the same meds again and said I had pleurisy.  They did a D-dimer each time and again, always negative…this ER visit they even did a CT scan without contrast and said there was nothing.  I began to think I was crazy or something…got really scared.

I was in my kitchen this past April and my daughter gave me something to cut open…instead of using the scissors, I used a small, very sharp knife…dumb, dumb, dumb BUT so glad I did because it was from that cut that got the ball rolling on finding this DVT, multiple bilateral pulmonary embolisms I had.  The knife went in deep on the side of my finger…told some friends on Facebook about and they urged me to go to the ER just to be on the safe side to make sure it didn’t get infected…..so, embarrassingly I did.  When I got there they took my BP and it was 179/145…they were freaking out and the thumb became last priority…my pulse was racing at 137.  They walked me back and did and EKG, D-dimer and some tests while they cleaned and bandaged my finger.  They I was informed to get a doctor right away about this blood pressure issue because it was serious.

The next day I did.  Blood pressure still was high, not feeling well in my chest.  He thought go ahead with another round of steroids and be rechecked on the blood pressure after two weeks.  I went in again, this time with tingling sensations (described like a hyperventilation feeling) on my left side from neck, chest, arm, leg and foot. He seemed puzzled. I went home, a few days later could not get off the couch, had a raging headache and still had the same symptoms but this time it was worse and could barely move.  I called the doctor and he suggested I go the ER. The ER checked all those things again.  Asked me if I would like to just go home and see what tomorrow brings or be observed overnight.  I chose to be observed overnight because I knew something was not right.  They kept saying I was just having muscle spasms causing the pain on my left side and was going to release me the next day.  A new doctor came to see me before they made final decision to let me go…we talked, she seemed very concerned and ordered a CT with contrast to check for clots even though the d-dimer was still negative.  Low and behold…nurses started rushing in, hooking me up to things just as I was about to tell my mom I was going home.  I put the phone down and asked him what was going on…he said you have clots in your lungs….WHAT! Me?  Not me…Super Mom.  What is going on…I was so confused and this was so foreign to me.  All kinds of emotions flooded through my brain…I cried, was terrified, confused…everything.

The next day the nurse asked if I would like to take a shower…I said yes.  When I was in there I got this Charley horse sensation and pull in my left leg.  It was very odd.  I debated whether or not to say anything.  Good thing I did.  She ordered a scan of my leg and there it was…a monster of a clot…18 inches!!!!!  There was the culprit that caused the embolisms.

Next day, I had labs…..and about 20 vials of blood were drawn.  All came back negative.

I finally went to a hematologist that did testing that was done and found what it was….I had the MTHFR C677T and the Prothrombin G20210A mutations (heterozygous and homozygous).  What all this means to me right now is that I am a lifer on blood thinners (Warfarin).  I see a genetic counselor on September 5th so this will help me understand…I do know I have to get my daughters tested for sure.

Well there you have the whole story.  I am still Super Mom but in a different and more special way now.  I see the world and my own life differently after coming so close to death.  Thank you all who were by my side from the beginning…my husband, children, family, friend and the friends I have made here that gave me my voice back to make a difference and spread awareness.  Here I am and here is where I want to be!

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A Survivor Speaks: Ankle Injury Turned Deadly by David

Survivor Speaks David

A Survivor Speaks: Ankle Injury Turned Deadly by David Bock

I was seriously injured when I slipped and fell in Upland, California on March 8, 2008, while visiting there from my home in Arizona. I was rushed to the Emergency Room (ER) of the nearest hospital where the ER doctor diagnosed fractures of my left tibia and fibula in my lower left leg (left ankle bimalleolar fracture). I was in a great deal of pain, and was told that the fractures needed open reduction internal fixation, a surgical repair. However, at that time the doctor only prescribed a pain killer, put a splint on my leg, and told me to follow up with my primary care physician when I returned to Arizona.

The next day, my wife and I drove back to Arizona, which turned out to be an extremely uncomfortable trip because of excruciating pain. The following day, I went to my primary care doctor who immediately referred me to an orthopedic specialist. The orthopedic doctor examined me and stated that surgery could not be performed right away, due to the delay in treatment which resulted in soft-tissue swelling.

A few days later on March 14, 2008, I had noticeable trouble breathing, and was taken to the closest ER by ambulance. Based on test results, I was diagnosed with a massive pulmonary embolism related to an undetected deep vein thrombosis (DVT) that had formed near the sites of the fractures in my leg.

I was admitted to the Intensive Care Unit (ICU) of the hospital for treatment of my pulmonary embolism, and my condition rapidly worsened.  At 2:34 AM on March 15, 2008, I became cold and clammy and my skin color turned pale. The hospital records indicate that I was unresponsive, stopped breathing, and my eyes had rolled to the back of my head.  A code blue for a respiratory arrest was called.  Fortunately, I responded after about 3 minutes of resuscitation. I was also treated with tPA (clot busting drugs) at this time. On March 17, 2008, I underwent surgery for the placement of an inferior vena cava (IVC) filter to stop any more clots from traveling to my lungs.

These blood clots developed as a result of the lower leg fractures I sustained in the accident, which then detached and traveled to my lungs and became the pulmonary embolism that produced my shortness of breath and chest pain. It was a near fatal episode, and I was fortunate to survive and be discharged from the hospital on March 19, 2008.

I believe that the postponement of proper treatment of my ankle injury, as well as delay in preventing or recognizing my DVT, led to this medical emergency when I almost lost my life.

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