April 9, 2015

A Survivor Speaks: I Am A Mother by Lynda Jurva

I Am A Mother-4

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!
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December 3, 2014

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!
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November 5, 2014

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!

 

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May 7, 2014

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.

 

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December 4, 2013

A Survivor Speaks: Blessed to Be A Survivor by Karen

Karen B. Cover

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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August 7, 2013

A Survivor Speaks: P.E. Isn’t Just for Physical Education by Trysh

Survivor Speaks Trysh

A Survivor Speaks: P.E. Isn’t Just for Physical Education by Trysh Thompson

Walking to my car winded me. This was abnormal.

Emptying the dishwasher winded me. This was really abnormal.

But, being the granddaughter of a hypochondriac (hmm, I wonder, did she have Munchausen’s?), I blew it off. On the flip side, I’m also the daughter of a man who had everything wrong with him. He brought all that upon himself with poor choices though, so still, I blew it off. Besides, whatever it was would be fine the following day.

Ha.

The following day I spent most of it in bed. When I finally emerged from the bedroom, I took the twenty step walk to the living room and couldn’t breathe. That’s when I knew this was bigger than an allergic reaction or a panic attack and I had to go to the hospital.

My husband stayed home with our daughter and put her to bed, I took off, cell phone in hand and said I’d text from the ER. I honestly expected to be home in a couple of hours.

I walked into the ER and the lady behind the glass walls (really, is that necessary?) asked me how she could help me.

“I can’t breathe,” I panted. “That walk from the car about damn near killed me.”

I repeatedly tell my daughter the world does not revolve around her. Let me tell you, when you tell someone in the ER you can’t breathe, the world actually does revolve around you. Into a room I go, and within five minutes, I’m hooked up to an EKG, they have ordered the IV, and the admissions lady brought the paperwork to me.

The monitor above my bed showed a BP of 181/110. I looked at the nurse and said, “That can’t be mine. That was the person before me, right? Cause I’d be dead.” She shook her head, “No honey, that’s you.” That’s about the point I got scared.

The doctor comes in to talk to me, he’s pretty nice. He’s telling me he’s going to get an IV started and order a whole bunch of tests. Okay, whatever, dude, cause I’m really in no position to contradict you.

I don’t understand the line of questioning. I get asked about chest pain. No, I didn’t have that. I hear them mumble that this isn’t normal. WHAT THE HELL ARE YOU TALKING ABOUT?

Well, three hours, a blown vein, an IV, four vials of blood, a d-dimer score of 4110 (it’s negative if it’s under 400), a chest x-ray, a chest CT scan, and another doctor later, I have a diagnosis.

Bilateral pulmonary embolism.

I watched enough House, M.D., I knew what a pulmonary embolism was. Quite frankly, I’m smart enough to know what the bilateral part meant, but, well, I blanked and went, “I get the pulmonary embolism, but what’s bilateral?”

The nurse and doctor, in complete unison, “Both lungs.” Ohhh. The doctor continued, “And the one on the left is freakin’ huge.” Freakin’ huge, is that a medical term?

After the doctor leaves (he’s the second one, the one who ordered the tests didn’t stick around long enough to find out the results), the nurse goes, “I was suspecting PE the whole time. But most people who come in with them are a lot less healthy than you.” Uh, thanks, I think.

I looked at her, “So, with this, I don’t get to go home tonight, do I?”

She laughed, “No, you’re not. And most likely not tomorrow either.”

Well, crap. There went my weekend.

During all of this I was texting my friends, my husband, keeping them up-to-date. My battery was practically dead at this point, but I managed to eek out one more text – to my mother, who was on vacation. “Hey, Mom, I don’t want to freak you out or anything, but I’m in the hospital. I have blood clots in both my lungs. But I’ll be okay.”

I’m taken to my room, and I get some of the worst sleep I’ve ever had. Let’s face it, if you slept well in a hospital, you were sedated. There was a woman down the hall screaming (she was, incidentally, sedated the following night), there were the vital checks every four hours, the 6 a.m. visit from the vampire who took six vials of blood … yeah, hardly restful.

I honestly felt fine, at least laying in bed. I didn’t understand all of it.

My husband comes up the next day with my cell phone charger (thank God!), some pajamas (another thank God!), and the kiddo. The kid took one look at me on the oxygen and flipped out. Great. It’s not like I had a choice, but she would not get anywhere near me. It actually really upset me.

My mom called to tell me they were changing their plane reservations and coming home early. I told her that wasn’t necessary, but let’s be honest, you can’t tell your mom anything. Especially my mom.

I did some googling about PEs. Thirty percent don’t live long enough to hear their diagnosis. WHAT? And I walked around like this for damn near two days? Wow. I also remembered a friend of mine’s mom died of a PE when she was in her early 40s. Oddly enough, I wasn’t freaked out. My stepdad accused me of not completely understanding the severity of what happened to me. I assured him that yes, yes I did.

But what good did it do me to wallow in it, I mean, it was what it was, I couldn’t change the fact it happened. (Side note, the survivor’s guilt came a few months later.)

The doctors told me they were going to test me for something called Factor V Leiden, a blood clotting disorder. If I was positive for it, I’d be on blood thinners for the rest of my life. Nice. But they usually test for it when someone as young as I was (31 at the time) comes in with a DVT or a PE. Okay, well, it’s another blood draw. Have fun.

I left the hospital after two days and a steady stream of visitors. Hell, you almost die and everyone wants to come see you! I actually initiated the leaving the hospital, I made them do my vitals without the oxygen. Since they were stable, the PA told me I could go home, so long as I was willing to give myself blood thinner injections until the Coumadin leveled out. Hey, I was cool with that, because this meant my daughter wasn’t afraid to come near me anymore! And I could do nothing at the hospital, or nothing at home. I’ll take home for $2000, thanks Alex.

I wasn’t allowed to go back to work until my INR leveled out, which took two weeks. I spent those two weeks online, looking up PEs, PE recovery, Factor V Leiden, DVTs, everything.

I read almost everything there was on Factor V Leiden. My mom was flipping about it, and she was praying it came back negative, she didn’t want me on blood thinners forever. (At the time, I was like, “eh,” now, having been on them for what feels like forever, free me!) But I wanted it to come back positive. Not so much that I wanted a blood disorder, but because I wanted answers as to WHY this happened to me. Plus, looking at the list of symptoms, I saw everything from which my dad suffered. Hmmm.

Ten days (and a phone call to the hospital and the doctor’s office) later, I found out that I was, in fact, Factor V Leiden positive.

In the years leading up to my father’s death, there had been some bad blood between us. Now I had proof that he had, in fact, given me bad blood. Thanks Ralph.

Luckily I am only heterozygous, so only one parent gave it to me. This also means that once I finish this course of blood thinners, I don’t have to be on them forever – at least not until I have another one, which research shows will most likely happen. Oh goody, something to look forward to.

But, it also means the deck was stacked against me. Factor V Leiden makes an individual 5-7 times (not percent, times) more likely to develop a blood clot. Fantastic. Smoking increases those chances, but thank God for small favors, I’m not a smoker. What also increases those chances? Birth control – a whopping 35 times more likely. Was I on birth control? Yes. Did I stop it after the PE? Yes.

What scared the hell out of me more is the thought I passed this to my daughter. Alas, we won’t find out for a long time. They don’t test asymptomatic children. Ugh.

So, there it was. Bad genetics combined with my desire not to have any more kids that led to my downfall. Who knew?

Worse yet, being Factor V Leiden positive, I should have been on blood thinners the whole time I was pregnant. Being that I didn’t know at the time, I wasn’t. So I looked up the things that can go wrong – it’s not pretty. Amazingly, I had no complications with her. Knowing what I know now, that is nothing shy of a miracle.

My life was completely upside down after that. I mean, I couldn’t eat salad because of the Coumadin and the fact my INR numbers were all over the place, I still couldn’t breathe, I had to wear a MedicAlert – something I never expected to have to do, and I had to go in for weekly INR checks – which were a pain in the ass. Anyone on Coumadin will tell you that.

A week after the hospital discharge, I was walking around the grocery store, and once I got the far end, the chest pain hit me. I clutched my chest and leaned against my cart, waiting for it to pass. It takes a lot to accept that your body just isn’t ready to do the things it used to do. Things that seemed like nothing before take everything out of you. For months on end, a Saturday morning worth of errands led to a Saturday afternoon laying on the couch, because I was simply exhausted.

Six months later we learned the “freakin’ huge” clot didn’t dissolve completely, and since the Coumadin wasn’t therapeutic a large part of the time and therefore pretty much worthless, new blood clots were forming and attaching to the clot. Result: I had to change blood thinners. Moreoever, I’m sort of freaked out that I walked around with that clot in my lung for months on end. How is that possible???

Since then, I’ve had a tubal, so I don’t have to deal with hormone-containing birth control anymore. Like I’m going to give the Factor V Leiden a leg-up again. Not on your life. Most importantly, not on my life.

Every ache and pain in my chest freaks me out, for fear it’s happening again. You’d think that being on blood thinners would alleviate that fear, but it doesn’t – after all, look how well Coumadin worked for me. I can’t even begin to imagine how much I’ll flip out once I’m off the drugs.

Dammit PEs suck.

Come to think of it, so did PE class in school.

PEs just aren’t good all the way around.

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