Patient Story: My Blood Clot Story by Denise Watrous

watrous-denise-photo_finalIn August of 2006, I was 32 years old. I woke up on a Tuesday morning with some mild shoulder pain. It was a dull ache. It hurt in the front, right above my clavicle bone, and all the way through to my back. I thought I must have slept on it wrong so I went about my day, and I took my then three-year-old twins to speech therapy then the mall. I then had lunch with a friend. I complained about my shoulder pain, and she lovingly said “Take an Advil and shut the hell up!”

As the day went on, the pain got worse. By dinner time, the pain was intense, and I noticed that it was harder to breathe. About an hour after that, I noticed that my heart also hurt, but since I have mitral valve prolapse (MVP), I didn’t pay much attention. At about 8:00 p.m., I noticed that the pain was very bad. My heart hurt, it was hard to breathe, and my jaw and left arm hurt. I thought I was having a heart attack. My then-fiancé, Chris, still lived in Illinois at the time. I told him what was going on and he told me, “You are not having a heart attack, stop worrying.” I thought, “I’ll call the ask-a-nurse hotline!” And that is what I did. The nurse urged me to go to the ER, stating that in women, gall bladder issues can present with shoulder pain. I just couldn’t shake the feeling something was wrong. The only reason I went to the ER was because my dad had a massive heart attack at 35 years old, and I thought, “Well, I have the family history….so I’ll go.”

I went to the ER at Waukesha Memorial. I drove myself. I remember telling the triage nurse, “Look, I don’t really need to be here, but they wanted me to come in.” I took my laptop to play games, if I got bored. Little did I know…. within 15 minutes of the doctor first seeing me, I was having a CAT scan. It was incredibly hard and incredibly painful. I had to raise my arms over my head, which I could hardly do. The voice of the scanner said, “Take a deep breath. Hold your breath.” I couldn’t. I had no lung capacity. After several tries, we got enough of an image for them to send it to be read. They took me back to my room.

I don’t know how long it was before the doctor came back. All I remember is how uncomfortable I was. I remember rocking back and forth, just trying to find a position that made breathing easier. It was futile.

The ER doc came back in and told me that they were going to admit me. They still tried to sugar coat things a bit, probably especially since I was alone. He told me I had “some clots in both lungs.” As he left the room to talk to the PA about admitting me, I overheard him say, “I don’t know if she’ll make it through the night.”

WHAT?!?!?!?! Imagine my shock, my horror, my terror! Many medical personnel started coming in. They put me on a heart monitor, oxygen and a pulse ox monitor. I was terrified. I was alone, and it was now the middle of the night.

Then, it got bad. I remember being uncomfortable. I went from discomfort to mind-altering pain that felt like I was dying in an instant. It hit so fast, it took all of my breath away. I remember hitting the call button as fast as I could, and time seemed to come to a halt. I remember turning around to watch my heartbeat on the monitor and thinking, “This is it, I’m going to watch myself flat line.” I prayed for my babies to remember me.

They rushed in and gave me a shot of Dilaudid (holy crap) to help with the pain. It took maybe just the edge off, but made me high out of my mind. The next few hours were a narcotic-induced blur.

I was in the CICU for five days. The morning after being admitted, I called a good friend of mine who is a doctor, because I knew she’d be honest with me. I asked her point blank, “Renee, am I going to die?” She paused for a long time and finally said, “I don’t know.” That terrified me. I knew she was being honest and she didn’t know if I would live or die.

I got Heparin blood thinners in the ER, and I left the hospital with a combination of Lovenox and Coumadin. Lovenox is a shot I would take every 12 hours in the stomach. I had to do that for four weeks. I was on Coumadin for 18 months. I had my blood tested (INR) twice a week during that entire time. I had constant huge bruises. I lost hair and memory, a little known side effect of Coumadin for some people. If I cut myself, I would bleed uncontrollably. My gums would bleed when I brushed my teeth. It was 18 months of praying I wouldn’t hit my head in an accident because I’d bleed out before help could arrive. It was 18 months of my then 12-year-old daughter getting in my face if I was napping, because she was checking to make sure I was still alive. It was18 months of waking up to any twinge of pain and being afraid it was another clot. It was 18 months of hell.

I have no family history of blood clots. I didn’t a recent surgery. The only two risk categories I fell into were being on a birth control pill and being on a road trip. What caused them, we don’t really know, but it could happen to you, too. My husband’s grandpa died in his sleep of a PE. My sister-in-law’s mom died of a PE. My other sister-in-law’s close friend died of a PE.

I encourage everyone to know what to watch for and know to get help. We are always told that the ER is for emergencies. I never in a million years thought I was having an emergency. As a woman, and like so many other women, I am polite and put others before myself. I’m here to tell you, if you have a pain that you don’t know about, go to the ER. Just do it. It is better to find out it is nothing than to be dead. A week after leaving the hospital, my doctor told me if I had gone to sleep that night, I would not have woken up in the morning. Don’t be in that position. Education is key. Stay healthy and stay alive.


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


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Patient Story: Not Ready to Go by Theresa Grinstead

theresa-grinsteadThe pain in my knee and calf was excruciating, but I am not the type to go to the doctor unless I’m dying (I’m sure you can tell where this story is headed). Maybe my new high heels were the cause – being a woman is painful sometimes. After about a week and a half of hobbling around, the pain subsided, and I had successfully avoided the doctor.

Fast forward two months. With snow in the forecast then, I planned for a quiet evening with Netflix. As I was contemplating what to have for dinner, I felt the strangest sensation in my leg. It felt like something popped, but there wasn’t any pain. Just as quickly as it happened, the feeling was gone. Within two minutes my chest started to tighten up. It got harder to breathe and suddenly I was seeing spots. It felt as if someone was sitting on my chest. Classic signs of a heart attack. I was going to pass out, and all I could think of was to call 911 so someone could find my body.

theresa-quoteI got off the phone with the dispatcher and started to feel better, but when the paramedics arrived, they insisted I was going to the hospital. As the EMT helped me put on my shoes – my Cinderella fantasy – I kept telling them I was feeling better. For the first time in my life, I’m happy that someone ignored my stubbornness. By the time I was in the back of the ambulance, I was getting sicker. My chest was hurting again and my stomach was churning. I had no idea how long it took to get to the hospital, but when we got there, I was in even worse condition. I felt as if I was going to pass out and throw up at the same time, which was pretty wretched. If this was a heart attack, I wished it would hurry up and take me. The doctor came in and told me that he was pretty sure it wasn’t a heart attack and wanted to know if I was on birth control. When I said “yes,” I heard him say those terrifying words, “blood clot.” The nurse immediately gave me an injection blood thinner.

Within the hour, it was confirmed that I had a DVT and a saddle PE. The popping sensation I felt in my leg was the blood clot breaking apart, finally settling in the major artery to my lungs. My oxygen level was at a dangerous 65 percent and my heart suffered damage in more ways than one. They wheeled me to critical care and was told I couldn’t move for 24 hours. Were they kidding? The next day my chest started hurting again, this time it was about ten times worse. My nurse was waiting for approval to give me morphine. I could tell by her voice, she was scared. I tried to focus on what a great nurse she was and not that I could be having a relapse, or something worse. When my pain was finally under control, the doctor came in to check on me. He diagnosed me with pericarditis. Huh? I needed Google, stat. The lining of my heart was inflamed, but fortunately, it would heal itself. The body is amazing that way. I stayed in the hospital for four more days. I had trouble breathing and was unable to hold a conversation without having to catch my breath. I’m a pretty quiet person, however, that week I wanted to talk to everyone.

When I went back to work three weeks later, I physically felt okay. Inside, I was a complete mess. Nobody told me how much this would affect me mentally. I was scared to be on blood thinners and scared to be taken off of them. Every little ache and pain sent me into a panic and I kept replaying the doctor’s words over and over in my head, “I don’t want to scare you, but I don’t want to sugarcoat it either. If you hadn’t called 911 when you did, you would have died.” Maybe I watched Final Destination too many times but I was in constant fear that death would come back for me with a vengeance.

I feel more stable now, although I still don’t let my phone out of my site. Living life to the fullest is no longer just a cliché anymore. Sometimes, I feel guilty for bouncing back so quickly when I know there are so many who take years to recover or do not have that chance. I truly believe this was a blessing in a hideous disguise since it happened at a very low point in my life. I was introduced to death, but I’m not ready for that relationship just yet. Life and I still have a lot to do together.


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


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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!

A Survivor Speaks: A Remarkable Recovery

I wished to share my PE experience which is now 3 months out. Back in May, I just came back from a successful but exhausting trip in Calgary to my Montreal home. I decided to extend the long weekend by taking Friday off when I woke up with a strange and out of place feeling in my right breast. It felt like a little inner poke or a little lump. It did not feel cardiac, more muscular, but still out of place. I found it strange as I only did cardio workouts for the last few days and did no lift any weights or performed push-ups. Since it was on my rights side, there was no immediate panic and I simply tried to rub it out over and over again. I even called one of my staff and joked about this sudden chest discomfort brushing it off as nothing.

I went downstairs, my wife was on the twins case about homework and getting their project done – being a traveling father and now dealing with this lump, I really did not want to get into it and kept rubbing by chest as the discomfort grew. At this point it was not painful but did not feel natural. We all have aches and pains and in most cases they go away – or so I was hoping.

The uneasiness grew, I did not want to scare my wife and kids and discreetly started to look up heart attack symptoms on my iPad, took 2 baby aspirins -and even some Tums. Even though it was on my right side, it was in my chest area. I had no typical symptoms except for this persistent lump that I kept rubbing. So I figured I had to “walk it off” and went to do errands with my head slightly getting overloaded with anxiety.

I came home and kept holding my chest. It was not really painful, just out of place. I figured I might as well get it checked out as it was not going away. Somehow this hit my little boy and he began to cry and fear for his Dad. I decided to drive myself to the Lakeshore General hospital in the West Island of Montreal.

Now Lakeshore is not the biggest hospital in Montreal and does not have the reputation carried by the Montreal General, Royal Vic or the Montreal Jewish hospital. It’s close by and convenient. I figured and “hoped” that if I did have a cardiac event, they would know what to do and, if need be, stabilize me and ship me out. But a hospital is a hospital and I just lauded spending possibly hours in ER triage and waiting room. I mean I looked really healthy otherwise so who knew what the wait would be, I packed up my iPod , iPad, chargers and portable Wi-Fi. I was set for the next several hours.

As I left home, my wife said, “Tell them you have chest pains and high cholesterol.”  Okay, I guess, anything to get through this faster so I can back home.

“Yes sir,” said the ER nurse. “Hum, I have high cholesterol and chest pains,” I replied

She barraged me with the typical questions and asked me the pain level from 1 to 10. Something I did not expect, at this point there was no DVT pain or anything except for this lump.

“About 3, but if I move this way or breathe hard it can go up to a 6 maybe,” I replied and went to sit down because I was getting light-headed with stress and hunger.

The wait was not that long after all; I guess being middle aged and complaining about chest pains gets some attention. The same questions kept coming back: “Why are you here? Where does it hurt? Do you feel nauseous?” And the dreaded, “What’s your pain level from 1 to 10?”

They gave me an EKG that was rather funky but not definitive. Blood work, several hours apart, was in order to see if the ticker got damaged and the gurney took me from triage to the bowels of the ER. A young Doctor who comes from the same country as my parents and with the seriousness of seeing one too many hypochondriacs asked me again to quantify the level of pain I had, if I had shortness of breath etc… Frankly at this point, I thought I was wasting everyone’s time including my own.

“Look,” I said, ” I’m in solid shape” which I am. “I was in Calgary where I did 3 solid cardio workouts in 3 days, doing 50 minutes on the elliptical followed by climbing 20 flights of stairs – no issues, no pain all good. My last night in Calgary was brutal as the fire alarm went off at 1:30 a.m.,  and I had an early morning meeting before coming back East that day. I was wiped by the time I got home. It’s probably just muscular, plus fatigue etc.”

The young Doctor kept saying, “We will just make sure.”  And for the next few hours, he kept checking up on me, asking if the pain was the same, and it was. The answers never deviated, but I wondered if I just needed to pack it up believing, that I was taking someone else’s bed that needed real attention. He kept coming back and then asked in a Dr House manner, “You said you travel, right?”

“Huh huh” I replied. “Let me check just one more thing.” He then proceeded to have me do a chest x-ray and CT Scan. All I could think was “Wow,this is Canada, not bad.” I was not keen on having this liquid in my veins, for the CT scan, but I’m here, let’s get everything checked. I did not think much about it. The young Doc came back at 11:00 p.m. to interrupt my Candy Crush game. “I’m glad I did the test,” he said, “You have blood clots in your right lung.”

I was to be kept overnight, monitored and told I would have to to take anti-coagulants and blood thinners. In the morning, I would see a hematologist. I asked if I could be out of the hospital by 1:00 p.m. as the puck was dropping at that time for the hockey playoffs. I had priorities obviously.

I was nevertheless stunned. I knew it was serious, but realized only when I started doing internet searches on the severity of the matter. The young doctor’s gut feeling to do this scan probably saved my life and/or avoided further internal trauma and damage to my lungs or worse. Spending a night in the ER is quite something, but the staff made me feel comfortable, even fetching me a sandwich when I was starving late in the evening.

I was quite happy to go home. Say what you want about the Canadian Medicare system, but it works. I had no papers, insurance or others to sign and all that it cost me was $13.50 for parking. I now continue to see a no-nonsense hematologist at the hospital and am proceeding strongly. I have recovered well, and after reading the challenges of so many, I feel fortunate. I was back doing long walks and working out. I did suffer a setback due to a severe summer cold causing extreme fatigue, but finally recovered from that and am back full swing. I continue to take Coumadin and am stable with little bleeding incidents. I will likely do so for a long time, if not life.

My PE was “unprovoked” and since treatments work and don’t affect my day to day life and sport activities, the Hematologist believes I should stay on. Overall, the hospital was great and accessible but I again attribute my recovery to this young ER doctor and his common sense gut feeling. While serious in his duties, I remember seeing him smile when I said, ” You know that Milan Lucic, the hockey player from Boston and nemesis of anything Montreal, he is one of us.”

Since I left, I joined Blood Clot Recovery Network on Facebook or BCRN. Sara, the founder, has been my rock, helping me understand what was happening to me, to my body, and what was I going through in the healing process. For this I’m grateful to Sara and her commitment. My awareness regarding thrombosis is at a heightened level, and I feel lucky to be able to share my story and while fortunate appreciate the struggles that so many who are afflicted by a blood disorder go through.

*Editor’s Note:  Thank you, Yves, for sharing your story with BCRN! Connect with Yves in the comments below or in the BCRN Facebook Discussion Group.

 

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A Survivor Speaks: A Blood Clot and A Beautiful Baby Boy

March 7, 2013 initially started off like every other weekday morning. I was getting ready to go to work, but for some reason I was having a tough time walking. I had been really sore the last few weeks: back aches, side hurting, and uncomfortable sitting down. I thought it was because of being pregnant at my age of 37. So, I pushed through the pain and discomfort and went to work. As I sat at my desk trying to schedule something, I couldn’t get off the phone quick enough to stand up. I became so uncomfortable at that point that nothing was helping. I looked down at my legs while describing my pain to a coworker and realized my left leg was swollen twice the size of my right leg, was ice cold to the touch and was turning blue. I mentioned it to my coworkers and they sent me home.

Eventually, after running a few important errands, I went to my OB’s office to have them check me. As soon as I walked in the door, the head nurse sent me to the Emergency Room. She said if she didn’t know any better, she thought I had a blood clot and that I did not need to let it go unchecked any longer. I got into my car and called my mom on my way to the hospital to have her meet me there.

Once I got to the ER, they immediately took me back and started drawing blood. A vascular surgeon came in, and upon examining my leg, immediately ran out of the room and ordered an ultrasound of my leg. The ultrasound was very uncomfortable because of the tech having to push down on my leg, but it also became another scary situation: they couldn’t find a pulse in my foot or any blood flow to my foot.

The vascular surgeon came back into my room shortly after the ultrasound to let me know I was being admitted for a couple of days. He said I had a DVT, but that he was so happy that the coloring of my leg was improving some the longer it was elevated. He said if it had stayed blue they may have had to amputate my leg! At that point, I took a trip outside of my own thoughts, as I couldn’t bear to think of losing my leg and was really only concerned at that moment of what all of this meant for my unborn baby.

Come to find out, my DVT is from groin to knee and wraps around behind my knee. I’ve been on Lovenox injections since March 7, 2013. I was told on March 9th when I was released from the hospital that I should be able to go back to work and resume normal activities in a couple of days. I have not been able to return to work, as I’m not able to sit without being in a great deal of pain, so I ended up losing my job.

I still deal with pain daily and have trouble walking and functioning like I used to. I have had doctors give up on me by refusing to treat me anymore, thinking I can’t get any better. I’ve had doctors that have also told me I’m making up all the pain and trouble with moving, and that I should be a fully functioning person within a month of being diagnosed. I’ve also been told that DVTs do not cause pain.

Now, I’m in the process of working with a vascular surgeon that specializes in interventional radiology who believes I have May Thurner Syndrome as well as some other issues with the veins in my leg. It pays to keep pushing forward to find a doctor that really listens to YOU. I’m working daily towards getting better. The great part is that I have a healthy, happy, beautiful baby boy that will be turning 6 months old the day after my one year DVT anniversary.

*Editor’s Note:  Thank you, Debra, for sharing your story with BCRN! Connect with Debra in the comments below.

 

Raising Awareness with Everyday Health

Everyday Health is a website dedicated to helping others live a healthy and well-rounded life by providing a variety of resources and personalized wellness tools. Topics range in topic from depression to diabetes to vitamins to weight-loss to beauty to recipes and many more, including Deep Vein Thrombosis and Pulmonary Embolism. Blood clots (DVT and PE) kill an estimated 300,000 Americans each year. The number of deaths from blood clots  exceeds those from breast cancer, AIDS and motor vehicle accidents combined (Source). Sadly, blood clots are also a leading cause of preventable hospital deaths in the United States (Source) and are often misdiagnosed simply because people do not know the signs, symptoms and/or risk factors associated with them. Recently, I had the privilege of raising awareness with Everyday Health by sharing my story of DVT diagnosis, treatment and recovery.

Here’s a small excerpt of my interview with Jennifer Acosta Scott at Everyday Health:

A Mission to Raise Awareness of DVT

Now that Wyen’s life has stabilized, she devotes much of her time to educating the public about DVT and helping others who are going through a similar situation. A few months after her diagnosis, she started Blood Clot Recovery Network. The site provides links to medical resources and shares personal stories of people living with deep vein thrombosis.

“When it happened to me, I didn’t know the [DVT] symptoms. I didn’t know what to look out for,” Wyen says. “I want to spread the word that you can be young or old, you can be any body size, any body type. You can read the site and file the symptoms and signs away. If it ever does happen to you, hopefully something will trigger in your brain — I should get this checked out. [Read More]

Please read the entire story and share in your networks. Raising awareness saves lives!

Also be sure to connect with Everyday Health on Facebook and Twitter.

Thank you to Jennifer and Everyday Health for sharing my story and most importantly, for raising awareness about DVT and PE, including the signs, symptoms and dangers associated with blood clotting.

There is hope for healing and you are not alone,

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