Patient Story: I Never Thought it Would Happen to Me by Victoria

Tovell, Victoria_Circle PicIt’s true, I had heard of pulmonary embolisms. I’m a pharmacist after all. The main thing I associated with having blood clots in your lung was that there was a very good chance you could die. When I chose to have elective knee surgery – a simple day procedure – little did I know six days later a doctor would tell me I had bilateral multiple pulmonary embolisms. I cried, of course. Although I was relieved, they finally knew why my heart rate was so fast, and why I could hardly sit up in bed without breathlessness.

The day after my knee operation, I was puttering around on my crutches, chatting to my best friend on the phone. Suddenly, I couldn’t get my breath. I could hardly speak. I got off the phone and I sat down. My heart was going so fast it was unbelievable. I felt faint, I felt very breathless, and I knew something was very, very wrong. I also started shaking and was drenched in sweat.

I was rushed to hospital and taken straight to resuscitation – not a good sign, I thought – and my heart rate was 180, so they tried to reset it with medication. I gripped my husband’s hand for dear life and repeatedly said “I love you and the children,” and I thought that was it. I thought I was going to die, but I am only 35 years old. I was frankly hoping for a bit longer. Thank goodness my husband is such a great dad. The kids would be okay. “We’ve been so happy. I’ve been lucky,” I thought as I waited to see if I would die. I will never forget that feeling. It pushes its way into the corner of my mind when I go to sleep at night.

Victoria QuoteI was actually sent home the next day as a dubiously unclear CT scan showed nothing. “It’s just a virus,” the doctor said as I struggled to walk two steps without breathlessness. Two days later, I deteriorated and my general practitioner sent me back to the hospital insisting they investigate again. A VQ scan showed multiple clots in both of my lungs. By this time, I could barely sit up in bed. It was the scariest experience I’ve ever had, without a doubt.

Eleven weeks have gone by, and I’m home now. I went back to work for the first time this week. I’m doing school runs and looking after my three children. I’m about 80 percent back to normal. I can function fairly well, but on a bad day, going up and down the stairs is still hard, and I experience gasping for breath a lot, especially when I’m tired. I’m getting there, slowly but surely. I still wonder if I’ll ever feel completely normal again, but I live in hope.

I’m just so happy to be a survivor. I’m so happy to still be a mummy to my children and a wife to my husband. I never imagined how up and down recovery could be, and I was amazed how little information on recovery I was given with no rehabilitation program at all. I would love to be an advocate to promote PE recovery, advice and support in the future. Mainly, I’m just happy I have a future!


Share Your Story SQEditor’s Note: Thank you, Victoria, for sharing your story with BCRN. Connect with Victoria in the comments below.


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Patient Story: Taking Charge of Your Life with a PE by Megan Weisgerber

Blog Photo Weisgerber, MeganOn a cold February afternoon, the pain in my legs and ankles was unbearable. After standing on my feet all day at work, I thought the pain was just from that, but it did not go away. I went to the local Urgent Care, they ran an EKG and since I had started birth control, the doctor advised me to go to the ER. I remember feeling frightened and thinking “What is wrong with me? What if I need surgery?” My parents were on vacation and I drove myself to the Urgent Care, so I called my boyfriend who immediately came and got me took me to the ER.

When I got to the ER, I felt as if my heart was about to come out of my chest. I was freaking out. I am only 18 and I had never been in the hospital. The doctor in the ER explained to me that a side affect from the birth control was a pulmonary embolism. I didn’t even know what that was. That night, I went for an x-ray which came back fine, but the doctor informed me to take a nap and in three hours, I would be sent for a scan of my lungs. He made it sound like I would be fine because the x-ray was okay. He said the scan should be negative and I would be going home afterwards. Shortly after they took me in for the scan, I was approached by a new doctor because my original doctor had gone home. The new doctor informed me that I had a pulmonary embolism (PE). I can remember exactly how I felt at that moment. My heart sank and I began to cry. I felt as if my entire world collapsed. My parents were almost three hours away. Thank God I had my boyfriend with me who consoled me.

I thought I would need surgery which was something I have never had. I have the biggest fear of being given anesthesia or having to breathe with the help of a machine. As I was crying, the doctor told me I would be placed in the hospital for a couple of days, which made me freak out even more. I am a college student and missing a couple of days is a lot of work to make up. I remember thinking, “How am I going to survive this? I can’t do this.” The doctor informed me I would be placed on injection blood thinners for at least three months. All I could think about was, “Am I going to survive this?!”

Weisgerber, Megan_QuoteI was transferred to the Children’s Hospital and was hospitalized for three days. The doctors and nurses at the Children’s Hospital made me feel at ease. They gave me the comfort I needed and they helped me believe in myself that I can fight this. I do not like letting my family when I am scared or worried. All I wanted to do was cry myself to sleep and wake up and have all of this be over. The first night when my family left and I was all alone, I just began to cry and cry. This was the first time that I was alone since I was diagnosed. I had the time to just reflect on everything. I told myself that I had to be strong for my family and that I would make it through this.

I went from living a carefree life, always being out late and enjoying life to having my world flipped upside down. Now, I am tired and worn out easier, I have to take injections twice a day and even on my days off, I have to wake up at 6:30 a.m. to take my shot. I feel as though I had to grow up and really get my stuff together.

There are times when it is hard and my friends want to hangout and I would love to, but I am just so worn out I can’t. I feel bad because they do not fully comprehend how serious and painful this has been. I learned a lot about myself, family, and friends. It is true that you learn who your real friends are when you are sick. People who I never would have expected reached out to me, and people who I thought would be by my side, did not even send a text. It’s okay, though, because I promised myself from now on I would only focus on positive vibes and people who care.

There is no way I could have made it through the past month without my parents, sister, grandparents, aunts, uncles, cousins, my boyfriend, Kris, and my best friends, CJ and Nick. They are the perfect example of a great support system. They were all by my side in the hospital when I needed them the most. I practically spent everyday with Kris and CJ before the clot. We would always be out late and enjoying ourselves, but now I cannot do that anymore. Yet, they still stay by my side even if it is just laying low and doing nothing. They understand and accept it.

I feel as if I am going to be okay now. Yes, I am worried that I will have to be on my medication for six months instead of three, but I know that God doesn’t give us anything we can’t handle. I have my special angel in the sky watching over me, and I know I will make it through this. I would love to become an advocate for pulmonary embolisms. People are not aware of how serious and dangerous this can be. I was living with one and my only symptom was my feet being swollen, which was something I would have never thought would lead to being on medication, injecting myself with shots for three months.


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Patient Story: A DVT at 25 by Carrie Smith

Smith, Carrie blogIn January 2009, I was starting my final semester as a senior in college. I was almost 25 years old and I was told I needed a total hip replacement in my right hip. I had several problems with bones on the right side of my body since birth and knew eventually I’d need hip surgery, but a total replacement surprised me. It was hard to accept, but since I was in constant pain and walking with a cane, the surgery had to happen.

I had my total hip replacement in May, two weeks after graduation. The surgery went well, but didn’t go as planned. The doctor had tried to lengthen the leg a little bit too much (as I had one leg shorter than the other) and he tore the sciatic nerve. The next day, I had another surgery to repair the nerve and a rod was placed into my femur. Recovery looked gruesome and it was.

The next few months were trying. On top of the constant pain that I was in (both from the nerve and my replacement), I was having relationship issues with my current boyfriend. I became depressed and angry. To get me out of this slump, my best friend at the time suggested a spontaneous and secret trip to Vegas, which was four hours away from where we lived. This was mid-August. We took the trip and it was one of the greatest nights of my life, even though I was hobbling on crutches the whole time.

A couple of days later, I had severe pain in my left calf, about three inches from my groin. There was also bruising, which was confusing because I hadn’t hit my leg on anything. I told my physical therapist about it and she sent me to the ER. I am a very stubborn person. I hate going to doctors, hospitals, etc. I’ve spent so much time in them, I try to “stick through the pain,” if I can. I think my therapist knew this so she told me that I couldn’t come back to therapy until I was cleared by an ER doctor. My mom took me in right away. After an ultrasound and waiting for six hours later, it was just before midnight when the doctor came in. I laughed because I was so sure that he was going to tell me nothing was wrong and to go home. He said I was going to be admitted immediately and put on blood thinners. I had a deep vein thrombosis or DVT.

Smith, Carrie quoteI was devastated. I was already deeply depressed and to have to spend three days in the hospital sounded horrible. Even though my hip replacement surgery had been months before, because of the crutches and DVT, I wasn’t allowed to get up from the bed by myself. It was humiliating going to the bathroom with a nurse beside me. I felt like a child. The doctor said I was lucky that it hadn’t gone to my lungs or my brain. I hadn’t even heard of a blood clot before. It was hard to believe that it could happen to me. If I hadn’t said anything to my physical therapist, if I would have ignored the signs and symptoms, I could be dead. I knew the risk I was taking when I took off to Vegas, being in the car for four hours one day and four hours the next day. Even though my doctor may have told me, I don’t really remember him warning me that this could happen.

This DVT could have been prevented. I was unaware and didn’t know all the facts. I think everyone should be educated, especially after having major surgery. Wear the compression socks they suggest, do the exercises, and take caution when traveling. The simplest second thought could save your life.


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Surviving Myself by Don

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Hello, my name is Don.  I am writing you to share my story and to express my sincere appreciation for your efforts with public awareness of clotting disorders.  I am a Paramedic employed with a Non-Profit medevac helicopter organization. We transport high acuity patients on a regular basis.  These patients range on a very broad spectrum, from multi-system trauma to acute medical emergencies including stroke, heart attack, and pulmonary embolism.  Education and clinical experience has informed me of specific manifestations to assess for, when differentiating acute pulmonary embolism (APE) as the causative culprit.  A classic text book description of pulmonary embolism is “atypical” chest pain, among many other descriptors.  Atypical meaning APE manifests in  a way inconsistent from other chest pain causing conditions, hindering diagnosis and impacting prognosis.  In my career I have cared for and treated many patients impacted by acute pulmonary embolism.

Prior to my grandmother’s passing, some early childhood memories of mine are visiting her during her many hospitalizations for deep vein thrombosis.  Her unfortunate “condition” was passed along to her children, specifically my mother and aunts. All have been plagued with numerous DVT hospitalizations, varicose veins, coumadin life changes, and lovenox shots.  Factor V Leiden has been confirmed as the genetic clotting disorder that has been passed down from generation to generation.

I am a relatively healthy 35 year old male that lives an active life with a beautiful wife and two young amazing children.  I’ve committed my career to helping others in their most worst times of need.  I volunteer a large portion of my free time to our local volunteer fire department and ambulance, serving as the Fire Chief and also a volunteer paramedic.

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Just about a week ago, I developed pain and discomfort in my right bicep.  The medical side of me dismissed the very “different” pain and discomfort to that of a typical pulled muscle, and life went on.  A few days ago, while tapping maple trees with my brother-in-law, one of our snowmobiles became stuck resulting in strenuous lifting.  The following day I began experiencing “atypical” chest pain.  Yet again, the medical side of me dismissed the chest discomfort and pleuritic pain as that of just another pulled muscle.  After all, what else could it be?  Following a few sleepless nights racked with severe stabbing pain radiating to my right shoulder, I relented and sought evaluation at my local emergency room.

Personally knowing the majority of the staff on hand, including the physicians and mid-level practitioners, still didn’t preclude my assessment to that of a strained muscle, despite my colleagues thinking differently.  During evaluation and initial work up, labs were drawn, and my D- Dimer was found to be elevated.  During my contrast CT scan, I was still convinced that I was experiencing a strained muscle, that is until the results came back.  Multiple acute pulmonary embolism with pleural effusion.  Ultrasound confirmed a large DVT in my right bicep.  Not until that point did my years of training, assessments, and experience finally clear up my personal tunnel vision.  It was all too clear.  Family history of Factor V Leiden, family history of DVT, pain in right bicep, strenuous physical activity and exertion, atypical chest pain and shortness of breath EQUALS pulmonary embolism.

How did I miss this?  The answer is evident among the medical community as a whole.  One out of every three pulmonary embolism patients presenting to the ER are misdiagnosed, according to a recent retrospective observational  study.  Education and awareness to the community, healthcare workers, and first responders is paramount.  This disease is quickly overlooked, and can be so very debilitating or even fatal.  So again, I express my appreciation for your commitment to public awareness and education, which unquestionably will save many lives.  God willing, I will continue my passion and save many more future lives.  If I could ever be of any assistance, please don’t hesitate to ask.

Thank you, Don, for sharing your story with the BCRN community. Be sure to connect with Don in the comments below!

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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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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!