October 17, 2016

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.

Read more Patient Stories from BCRN.

Visit How to Share Your Story to share your story with Blood Clot Recovery Network.

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October 11, 2016

“The Patient’s Playbook” Review

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I have been given this product as a part of a product review through the Chronic Illness Bloggers Network. Although this product was a gift, all opinions in this review remain my own, and I was in no way influenced by the company.

Often times throughout my recovery, I wished for a guide to get me through the situations I was facing. I went from never being sick to facing a health crisis that nearly ended my life – and I had no idea what to expect or how to deal with it. It felt like around every corner throughout my hospitalization, diagnosis and recovery, there was something I needed to be prepared for – only I had no idea what those things were, so I couldn’t be prepared. It was just one devastating blow after another. I was frightened, alone and unsure of the future. If only I could have read a book that said, “do this,” or “understand this,” and I would have felt just a little bit more in control of what was the most out-of-control situation of my life – navigating a health crisis that should have killed me.

As we know, there is no guide to understanding a blood clot diagnosis or recovery from blood clots, aside from the growing number of internet resources and support groups, often patient-led and patient-run. However, there is a guide to help you save your life during a medical crisis – or the life of someone you know – and ensure you are receiving the best medical care available.

The Patient’s Playbook by Leslie D. Michelson is that guide. It can help you change the way you manage your health – for the better. Each year, too many Americans die as a result of preventable medical error, such as mistakes, complications and even misdiagnosis. Many more people are not receiving the best care possible, simply because we don’t know to get it – or we are too afraid or overwhelmed to ask for it. The Patient’s Playbook can help you change that.

Leslie D. Michelson, the founder, chairman, and CEO of Private Health Management, and former CEO of the Prostate Cancer Foundation, is devoted to helping people achieve superior medical outcomes at every stage of their lives. His real-life stories and relatable examples in The Patient’s Playbook provide expert advice to help you choose the best doctors, select the right treatment plans, do better research online, organize and utilize your support team and ultimately prevent medical errors.

I’ll admit – I was skeptical about reading this book. I didn’t think there was anything I could possibly gain from it. After all, I had already been through and (narrowly) survived a medical crisis – it felt like a gigantic waste of time to read something that could have helped me then, not now. The truth is, I read this book very quickly and felt like a sponge while doing so – I couldn’t get enough of the information inside. Even though I have already been through the exact type of medical situation that Michelson seeks to prepare me for, this book is now an invaluable resource for me, should I ever face another medical crisis, or should my family ever have to go through something like I did. Everyone should read this book.

I could easily – and gladly – tell you about everything that I learned in this book, but that would get really long and really boring for you. Michelson uses some great examples to get his points across – many of which reminded me of my own situation – which is one of the things I loved about the book, and something you just have to experience for yourself. Instead, I am going to share the key points that struck me as invaluable. While I highly encourage you to read this book – if you don’t, or can’t – I want you to at least have some knowledge from reading my insights. These are three topics I see on a regular basis in the Blood Clot Recovery Network discussion forum, on Facebook and around the web – and they’re good ones to discuss.

Your primary care physician (PCP) is everything. And if he or she is not, do something about it – NOW.

Your PCP should be the foundation for everything in regards to your care. If he or she is not, find someone who is. You have the right to search for a PCP like an employer would search for an employee. If your PCP is not providing you with care that is helpful or knowledgeable, or care that you are comfortable with – get a new PCP. I cannot stress that enough. You have the right to look for a PCP that is a partner in your care. He or she should be an expert in you. He or she should be finding problems before they become bigger problems – and helping you get to where you need to go if the problem is out of his or her hands. I see time and time and time again, people become complacent with the care provided by their PCP, are afraid to speak up, or don’t think they can, and that is hurting you, the patient, in the long run. Please, consider your relationship with your PCP and determine if you are receiving the best care out there, with the help of The Patient’s Playbook.

You need a to see a specialist – and your PCP should help you get to one.

Now that I have made the case for a good PCP – your PCP cannot solve everything, but he or she should be able to direct you to where you need to go to continue your care with a specialist. Your PCP should have a network of specialists that he or she trusts to help you, should you face the worst situation. Rely on your PCP to get you to a specialist, but not to provide specialized care. You might have to see a specialist – like a hematologist for your blood clots and/or blood clotting disorders – discuss who to see with your PCP, and find a plan for seeking our specialized care in The Patient’s Playbook.

Second opinions are really, really okay – and so is questioning your diagnosis.

If you have questions about your diagnosis, treatment or care – ask them, ask them. Even if you have to get a second opinion, get one. That is okay….it is okay to ask for a second opinion. You are not going to hurt anyone’s feelings, but you might hurt your health by not asking. You deserve the right opinion from the right expert. The Patient’s Playbook provides lists of where to go to seek reliable information about illnesses and specialists to help you with this part.

Michelson’s work is packed with examples and resources – packed. There are even some valuable tips that I know you all discuss every day in our support communities, such as how to stay safe in the hospitals, how to stay connected with your support systems, and how to get in sooner when you need to see your doctor or specialist – it’s all in this book.

Michelson wraps up The Patient’s Playbook with two thoughts that resonated with me beyond belief (and don’t worry, I am not spoiling it for you, if you decide to read it).

The first point is when he writes –

“Anyone who’s conquered a potentially fatal illness comes back a changed person. The crisis of confidence you may go through can take years to process.”

Just let that sink in for a moment – I had to. And then I read it again, and again. Michelson “gets it,” he really does. After all, the changed person that I am, and the years of processing, is a large part of why Blood Clot Recovery Network exists. Surviving a near-fatal blood clot changed me, it changed you, and together, we’re trying to process it and heal.

And secondly, he writes –

“If you have come through a life-threatening illness, the best was to do something with your survival is simple: Use your experience to help someone else.”

It was at this point that I had to set the book down for a while and take a deep breath (good thing it was towards the end). Think about it, the best way to do something with your survival – with my survival – is to help someone else. Every single day I try to take what has happened to me, and reach out to someone else who is scared, suffering, hurting or alone, because that is how I was when I first got out of the hospital and for weeks and months after that. And each and every day, at least one other person asks me what he or she can do to help. That’s it. That’s all you, me, we have to do – we have to help someone else. The very best way to do that, that I have found, is so simple – and Michelson agrees – just reach out. Tell your story, talk about what you have been through, share what you did or learned, and let someone else know they are not alone.

 

There is hope for healing and you are not alone,

 

 

Reader Writs In: Why do want to read The Patient’s Playbook by Leslie D. Michelson?

You Survived a Blood Clot…Now What? If you’re newly diagnosed, read this.

Heading to your first follow-up appointment? Take these questions to your doctor’s appointment.

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September 26, 2016

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.

Read more Patient Stories from BCRN.

Visit How to Share Your Story to share your story with Blood Clot Recovery Network.

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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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July 16, 2014

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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June 11, 2014

Three Symptoms You Should Never Ignore

Deep vein thrombosis (DVT) and pulmonary embolism (PE) are, without doubt, the most painful injuries I have ever experienced in my life. As a prior athlete, I had become accustomed to pain to some extent. After all, training for a half marathons is not meant to be pain-free. My legs hurt, my feet hurt, my shoulders hurt and even my lungs hurt at different points throughout my training. Growing accustomed to ongoing knee pain actually contributed to a delay in my seeking medical treatment for my DVT because I thought it was a result of a recurring overuse injury. I finally went to the Emergency Room (and only after instruction from my family physician) when I was struggling to breathe. Pain, as I have come to find out, is also a part of recovery from a DVT and PE. As we become more accustomed to pain during recovery, there are three symptoms you should never ignore when it comes to your health.

Learning to gauge what pain is critical and what is a normal part of recovery can be difficult and, above all else, it is important to remain in contact with your physician about your specific symptoms. Pain, for me, comes and goes now, two years out from my DVT and PE. Some days I feel great and other days it is still a struggle to get up, get dressed and walk up the stairs because of pain in my leg affected by DVT or pain in my side from the PE. While the pain has lessened over time, I did not know what pain was normal and what wasn’t in the beginning. Two months after I was admitted to the hospital with the PE, I was re-admitted with pain in my same side, this time as a result of pleurisy (or inflammation of the lining of the lung). I called my doctor and he indicated given my very recent history of PE, it was better to get it checked out than to wait. And, when in doubt and regardless of the perceived severity of your symptoms, get checked out, especially these three symptoms!

As time progressed, I learned to gauge pain, but once again found myself in the ER more recently with a severe headache that lasted over a day and caused blurry vision. That was abnormal for me, something new and a growing concern the longer it persisted. Again, my doctor advised that given my history of clotting and increased risk of stroke due to antiphospholipid syndrome, it was best to get it checked out. In this case, it was just a headache (presumably brought on by lack of sleep and stress and maybe a protruding wisdom tooth), but again, I did not know.

Now, after these experiences, I know there are three symptoms you should never ignore – regardless of your past medical history.

1) Difficulty Breathing/Shortness of Breath

Shortness of breath has many different causes. For example, known and chronic heart disease can cause breathlessness if your heart is struggling to pump blood throughout your body.While you can have difficulty breathing with, for example, pneumonia or bronchitis, it can also be a symptom of something life-threatening such as a heart attack or a PE. You should seek immediate medical assistance especially if your symptoms appear suddenly, are long-lasting, are new or do not subside with regular rest.

2) Chest Pains

Causes of chest pain can vary from minor problems, such as indigestion or stress, to serious medical emergencies, such as a heart attack or PE. The specific cause of chest pain is often difficult to diagnose without medical attention. Chest pains that appear suddenly are of significant concern and can be symptoms of a PE, heart attack or even a stroke. Chest pains may present as numbness or tingling in the chest area, back or even the shoulder arm/area. You should seek immediate medical assistance if you experience chest pains that are sudden and unexplained.

3) Headache (sudden onset, long-lasting or especially one that causes changes in vision or speech)

Common types of headaches include tension headaches, migraines, sinus headaches, and headaches that begin in your neck. You can have a headache with a cold or flu or as a result of other illness. They can range from mild to severe in symptoms. Headaches that are particularly concerning are the ones that come on suddenly, last for an extended period of time or cause changes in vision and/or speech as these can be symptoms of a stroke or blood clot. You should seek immediate medical assistance if you experience a headache with any of these symptoms.

The bottom line is, you know your body best and as you are recovering and learning what pain is normal for you, it is important to keep in touch with your medical professional about any sudden or unexplained symptoms you experience. If you cannot get in contact with your doctor or are concerned, chest pains, shortness of breath and headaches are three symptoms you should never ignore when it comes to your health.

Share your story. Do you agree that these are three symptoms you should never ignore? How are you listening to your body?

There is hope for healing and you are not alone,

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