Be Prepared for an Unexpected Health Crisis

Four years ago, I didn’t know the pain in my leg and in my chest, along with shortness of breath, were symptoms of life-threatening blood clots. I was incredibly lucky to get help for what I was feeling in time, and perhaps just hours before it was too late. This is especially true when you consider the fact that some people never experience symptoms of blood clots. They just don’t survive a blood clot in their lung, or pulmonary embolism. To say I survived what is an often silent, or invisible, killer is something that I think about quite often. Since my blood clot diagnosis and recovery, I have heard from countless people who have lost a friend of family member to a blood clot because they didn’t know they had one, they had no symptoms or they didn’t get medical care in time. It can feel impossible to be prepared for this type of unexpected health crisis.

To say I survived a silent killer is a large part of why I do the work that I do today. I hope that by sharing my story, I can help educate other people about not only the signs and symptoms of deadly blood clots, but also about their risk for one in the first place. I believe that knowledge is one of our best defenses against blood clots and knowing can help to save lives. Now that I know I am at risk for blood clots – and I know what they feel like – I will never delay seeking treatment for as long as I did. Two days of wondering what was going on nearly cost my life.

Carbon monoxide, also known as CO, is another often-ignored silent killer. It is a colorless, odorless, poisonous gas. Symptoms of carbon monoxide poisoning can include a dull headache, weakness, dizziness, nausea or vomiting, shortness of breath, confusion, blurred vision or loss of consciousness. CO poisoning is especially dangerous if you are sleeping or intoxicated, and is a medical emergency because symptoms can be subtle, but can also be deadly.

Those symptoms bring back some unhappy memories of what I experienced with my pulmonary embolism minus the severe pain. It was my hope to never feel anything that caused me great concern again. Yet, there I was on Saturday night, winding down and watching TV after dinner, when out of nowhere, I got a headache, felt dizzy, and felt nauseated. I shook my head around, trying to clear my eyes. The TV screen was blurry, and I suddenly felt out of place, or unsure of what was going on. Generally, my first thought would be “something is wrong with my INR,” but instead I thought, “It might be carbon monoxide poisoning.” I don’t know why I thought this. All I know is that I Googled the symptoms of CO poisoning (I know, never, ever do that) and the rest is history as we know it: I had carbon monoxide poisoning.

As it turns out, even more people experience CO poisoning that I realized. Per the U.S. Consumer Product Safety Commission Carbon Monoxide Info Center, more than 150 people in the Unites States die every year from accidental non-fire related CO poisoning. The U.S. Centers for Disease Control and Prevention states that an average of 430 people die in the U.S. a year due to CO poisoning and countless more are hospitalized due to symptoms. CO poisoning is often associated with consumer products, such as generators. Other products that can omit deadly CO include faulty, improperly-used or incorrectly-vented fuel-burning appliances such as furnaces, stoves, water heaters and fireplaces.

So, while I’m not exactly sure just how many people do die from carbon monoxide poisoning each year, I was exactly sure that I was going to be one of them. There was nothing that anyone could have said or done to convince me that I was not experiencing the symptoms of carbon monoxide poisoning. While I wasn’t running a generator, and I did not have a faulty or improperly installed stove, refrigerator, water heater, furnace or fireplace, I was certain I had missed something, somewhere, and one of these things was omitting odorless, tasteless, deadly gas directly into my bedroom. I was certain that when I went to sleep on Saturday night, I would not wake up on Sunday morning. The only thing the Internet could not tell me was if I had CO in my house.

When my husband came in from outside, shaking the snow off his boots, and proclaimed, “I feel funny in here, but fine outside,” that sealed my fate.

“I think we’re suffering from carbon monoxide poisoning,” I said. He promptly turned around and started lacing up his boots again.

“What are you doing?” I asked. He responded, “I know where this is going, you don’t have to tell me. We’re going to the store to buy a detector.”

Sure enough, at half past midnight on Sunday morning we were on our way to the closest store to find a carbon monoxide detector, but not just any carbon monoxide detector would do. We visited a total of three stores (thank goodness for 24-hour stores) before we found one that plugs in (and will therefore move when I am worried about another room in the house or work when the power goes out). Over an hour and over $40 later, I was back at home, eagerly reading the instructions to set it up. Much to my complete panic, it beeped wildly as soon as the back-up battery was installed, but soon settled on a “0” CO reading, and my sense of peace was restored. I must have been tired or dehydrated – or maybe I ate too much at dinner, much too late – and that’s why I didn’t feel good.

“So, we’re not dying of CO poisoning,” I said to my husband, thoroughly relieved. He replied, “I never thought we were,” equally relieved to be getting ready for bed. I proceeded to thank him profusely for trekking miles from home with me on a cold Saturday night just so I could have peace of mind. Okay, we didn’t trek – and I drove – but I am still grateful for his support in situations just like this.

I nestled into bed, a smile on my face, when one last thought crossed my mind: You’re crazy. I sat up like a lightning bolt, once again unable to relax. A thousand different thoughts entered my mind after that ranging from, “you don’t have every disease, ever” to “you might, you never know” to “you can’t tell anyone about this” to “that was probably a waste of $40” to “what if that $40 saves your life someday” to “you should probably have a CO detector in every room now” to “when was the last time you checked the smoke alarm.”

I only spoke one of them, “Do you think I’m crazy?” My husband answered from the darkness, “No, at least you know we aren’t dying of CO poisoning.” I waited for the “but,” the “and,” the “next time,” but nothing came.

Then he said, “Do you think you’re crazy?”

I didn’t answer him that night, but I laid awake for a while thinking about it before I came to one conclusion: No, I’m not crazy. But surviving something that can kill you – maybe even silently, with no warning – sure does change your perspective on things. I worry about more health-related things, I wonder if I have a health condition that isn’t easy to detect, I wonder if I am sick with something horrible I don’t know about, and yes, I sometimes think the tiniest inconsistency might mean something horrible is wrong with me. It can be maddening if I let it control me.

What I have also come to realize is that all I can do is be prepared, and if that means spending money to buy a detector so I don’t have to worry about carbon monoxide poisoning, then that is what it means. While having a CO detector might be pointless to someone else, it is invaluable to me to have peace of mind about one health condition I can’t otherwise control. Not unlike blood clots, I know my risk for CO poisoning, I know the signs and symptoms of CO poisoning, and I know how to protect myself and my family from it. This happens to be a health concern that was handled outside of a doctor’s office – my symptoms had subsided by the time we returned from the store – but even if it wasn’t: be prepared.

While the unexpected – and the unknown is scary – I think it is possible to be prepared for an unexpected health crisis. Talk to your doctor about your concerns, get your annual wellness and physical exams and tests, pay attention to what your body might be telling you, and take care of yourself to the best of your ability. If you do get sick or injured, have resources on hand to help you, know where to go to get the information you need. Know how your insurance works, how to get care if you don’t have any insurance, find a primary care physician you can rely on to help you get to the specialists you need to see, as soon as you need to see them. Whether you install a CO detector, quit smoking, start exercising, eat healthier, or wear a helmet riding a bike, be prepared to take care of the one and only you.

There is hope for healing and you are not alone,

 

 

 

 


Reader Writes In: Do you worry about health-related things more since your blood clot? How do you handle your anxiety?


What does recovery from a pulmonary embolism feel like? Get more info to share in this post.


Do you suffer from panic attacks? You’re not alone. Here are my tips for how to handle a panic attack after PE.

Patient Story: What the heck is happening?! by John Walker

walker-john-photo-editedI had just secured my dream job of all time, and finished my first year with glowing praise. Life was awesome for the whole family! Now, with good medical coverage, it was time for checkups and even a look at that hernia. So after a few consults, I went in for a hernia surgery. It went well, and after a few days, the pain and anesthesia began to wear off, so I was beginning to move around. In my left arm, I noticed what looked like a long dark, red rope where my vein should be, and a golf ball size lump in my lower bicep. I thought it was IV complications, and I didn’t think about it much. On a recent physical, I was told I was healthy as a horse. I wasn’t even thinking about my mom’s blood clotting issues.

After a few more days of my arm getting stiffer and more sore, I went in for an ultra sound with orders from my primary care physician (PCP). After the ultra sound, I was admitted to the ER with several DVTs – or blood clots – in my arm.

Next came three days in the hospital with all sorts of tests, blood thinners, visits from a hematologist and other doctors, all with me having a hard time taking a deep breath and feeling miserable, not really comprehending it all. Then came the CAT scan and the hematologist told me I had a clot in my right lung or pulmonary embolism. That word went right through me. I had recently lost a friend to a blood clot and suddenly wondered, was this my time? Alone in that hospital bed all night, I went back and forth on the idea of dying, for both my family and myself.

After three more days, I was sent home with Xarelto and warnings to come right back if there was chest pain, difficulty breathing, nausea, sweats, fever, etc. I was wheeled out to my car with a follow up appointment in a few days to the same hematologist.

Home has been weird. Yesterday I was dizzy and weak, but today I am breathing better. The cramp-like pain in my right side went to my upper right chest, and now is back to my right side again. No chest pain, and breathing better. So now I sit and wonder, what the heck just happened?! What will happen next?

Thanks to Blood Clot Recovery Network and all of your stories, I have an idea of where this is all heading. I have hope. I thank all you for telling your stories and offering so much advice. I feel much less alone with this now and a little less afraid.


Share Your Story SQEditor’s Note: Thank you, John, for sharing your story with BCRN. Connect with John, or share your thoughts, 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.

That one thing about blood clots everyone should know.

one-thing

When I was diagnosed with a blood clot and as I went through recovery, I was surprised how much I – and other people I knew – did not not know about blood clots. There was so much I wanted to share with people as I recovered – blood clots hurt, recovery took a long time and yes, you could have a blood clot if you were young, active and healthy. Sometimes, I wished I could just hand people a piece of paper (or several pieces of paper) that said, “Here, here is what you need to know about what I am going through right now. It’s not fun, it’s not easy, and yes, it takes a very long time. Here’s why.”

Have you ever felt that way too?

A number of weeks ago, I asked you a very important question on social media: What is the one thing about blood clots everyone should know? And you answered. 

If you have been diagnosed with a blood clot, it can be difficult to understand – and explain – what you are going through. Here are some thoughts about blood clots and blood clot recovery that you should know. These thoughts are compiled from people who have suffered from blood clots, or who know someone who has suffered from blood clots, as shared with www.BloodClotRecovery.net across a variety of social media channels.

You can also download and print these thoughts to read when you feel alone or to share with someone you know.

What is the one thing about blood clots everyone should know?

Blood clots cause pain.

It doesn’t always mean you’re going to die. I spent three days in the hospital scared I was going to die because I’d known two people who have died. A nurse and a wonderful doctor finally explained that while it was serious, and could have been fatal, I was going to be okay.

It takes time to heal and recover. Be gentle with yourself and listen to your body. It’s okay to rest – you’re not being lazy.

Blood clots are life changing.

Don’t ignore symptoms. It’s better to be safe and get checked out, then lose your life.

They can reoccur, even with proper medications and monitoring.

Listen to your body.

Anybody can get blood clots!

Don’t ignore blood clots – any one, of any age can get them.

They suck A** – just saying.

Definitely listen to your body, rest, ask a lot of questions, and see a psychologist, if needed. Having PEs as bad as mine were, it messed with me terribly.

You don’t always know you have blood clots….shortness of breath may be the only symptom you have!

Blood clots can cause anxiety, sometimes debilitating anxiety, for years to come. Talk to your doctor about that, and know you’re not alone.

It’s okay to cry.

Blood clots kill people.

You can have almost none of the “classic” symptoms, and still have blood clots, and you don’t always get an answer as to why they happened.

All I had was a pinch in my side. I had no idea that my life had forever changed that day.

Blood clots changed my life.

Not only did blood clots change my life in fear, but they changed how I am towards people. Anger, anxiety, depression – one day you think, “I’m okay,” and the next you’re in a panic. The second time around with PE, both due to giving birth, and I hate that this has happened to me. There needs to be a cure, but it feels like no one is even trying to find a cure. They tell you to pop a pill and send you on your way. Seriously.

Listen to what your body tells you, not what others tell you.

You will never be the person you were before. Be your best advocate. Ask any and all questions. Know that you aren’t alone. Listen to your body. It will get better!

This doesn’t happen to everyone, but it happened to me: A few days before my Pes, I had a strange feeling that I didn’t want to be alone, because for some reason, I thought I was going to die and I was afraid. I’ve read this happens to some people, so don’t ignore it, if you feel this. If you didn’t have it happen to you, I know it sounds crazy, but it’s real. Listen to your body and your mind.

You will have better days and bad days. Be thankful for the better ones.

Blood clots suck the life out of you.

It takes time to heal and post-clot anxiety is common. You don’t just start taking medication and everything is suddenly okay.

You may think you’ve just pulled a muscle.

You may look well on the outside, but there’s a lot going on inside and it changes people.

Blood clots are extremely painful.

The emotional side you have to deal with after is hard. Anger, anxiety, depression, etc. are all normal, but no advice is usually given to help with this, or it is not linked to what you have just been through. You have had a near death experience and it’s exhausting.

Pre-clot people should know that the condition even exist. Post-clot people should know everything about thrombosis, because your doctor might not know. We, the world, need more information put out in the commercial world. Way too little information is available for such a common, often fatal condition.

Thrombosis information should be as common as cancer and heart disease. Until I had my first DVT, I assumed it was no worse than a hiccup. I had heard of people (acquaintances, etc.) getting blood clots, but I never heard of it ever causing anyone any problems, and I never heard of anyone dying from them.

I had a DVT with no redness. I had a PE with no coughing.

I have a DVT and PE and it is not nice to go through for two years.

My DVT was asymptomatic below the knee. I only had one symptom: the sensation of a pebble in the back of my knee. A Doppler scan showed sluggish flow throughout my leg.

Blood clots can turn you into a hypochondriac!!! But it is always better to check.

Post-thrombotic (PTS) is hard to live with, but take I every day as it comes, being thankful I’m still here.

Blood clots can happen any time.

Blood clots left me without my brother and also ended my career!

Blood clots turn your life upside down…. the fear, the pain, the anxiety, the anger…. etc. I think about how close to death I was daily, and hope and pray that it doesn’t come back. I had bilateral PEs in December 2015, but it seems like yesterday. I have had so many trips to the ER and doctors afterwards, just because I am afraid that I have another. I am financially and emotionally drained.

Blood clots don’t discriminate! It’s not just surgery that causes clots. It’s not only immobility that contributes to the formation of clots. It doesn’t only happen in the elderly. Not all clots are in legs. People keep asking me, “Clots? Isn’t that what old people get after surgery while sitting around recovering?”

I’ve had two PEs. One with calf and chest pain. The second with no pain at all, just shortness of breath.

Just go to the ER, even if you think it is not a clot. Let go of the fear of going in for nothing.

When a group of doctors sit you in a room and tell you your diagnosis and anticoagulant therapy is your one and only option because the clots in the brain cannot be accessed surgically due to the high risk….You look at their discouraging eyes and realize all you can do is hope and fight. At any moment, you realize you can take your last breath, and all you have is this exact moment to live and breathe.

I’ve not had the easiest life. This though, was the experience that taught me about love, friendship, family, life, and that I was stronger than I ever thought.

It can happen to anyone, and you need to be strong throughout the whole recovery. Otherwise, you will feel lost and not have the courage to keep fighting through it all.

Even though the previous episode wasn’t that long for me, it still lingers in the back of my mind, when and how the next episode will be. Just one step, one day at a time. My main concern is the cost involved. If cost wasn’t a concern, I think that it would minimize a portion of our anxiety and just really concentrate on what is at hand.

Many people still do not know what they are or what the symptoms are – if you feel you may have them get to an ER as soon as possible! When you are unconscious you cannot describe your symptoms! Also, this is one of the most misunderstood medical problems.

How looooooooooooong recovery is… and sometimes you’re never the same.

Blood clots fundamentally change your outlook on life, which is not necessarily a bad thing.

My daughter has a better attitude towards life…for the most part.

It could happen to anyone, at any time!

They happen, but you can recover better than before.

It takes time to heal, even after the clot is gone.

Surviving one can cause a lot of anxiety, fear, and even panic. Don’t be afraid to seek psychiatric help or get counseling, and find someone that specializes in PTSD.

Anyone who has a blood, please join this group, Blood Clot Recovery Network.

There often aren’t answers.

Don’t be a hero, ask for help.

You don’t realize how close to death you are, but you can get better.

It can happen to you, and the only symptom may be a mild cramp-like feel, not a swollen, red, warm calf. Trust your instincts, and don’t be afraid to get checked out.

I never knew that pregnancy was such a high risk for blood clots. I think women should know that

I had six clots within 30 days of birth. I had no idea pregnancy was a bloody nightmare for sticky blood!

You can get swelling even after blood clots have gone.

Many any health care professionals aren’t well informed about blood clots. Blood Clot Recovery Network has been so helpful for me in learning others are going through similar struggles. You aren’t alone!

It can happen to anyone, at any time

Listen to your body!

I’m exhausted. Yes, even just getting dressed is too much, sometimes.

Age does not matter!

They could be deadly, if not treated

It can happen to anyone! You don’t have to be older or sick, it can literally happen to anyone, at any time, no one is excluded.

Anyone can get them!

You can survive.

Drink a lot of water, keep moving.

The symptoms and recovery differ for everyone.

Blood clots happen way more often than people think

There is no backsies when it comes to blood clots. Once you have one, the damage is done. Many survivors live with impairments from their clotting events.

Chronic pain in the leg after a clot can be devastating for so many. Things like sitting at a desk or flying are never the same.

There will be good and bad days.

Blood clots are life changing.

Don’t ignore the symptoms! Go to the ER and speak until someone listens! You don’t have to die from this.

Blood clots can happen to even the healthiest, most active people, out of nowhere. They need to be taken seriously.

We put on a happy face, even though we live with chronic pain.

It will be painful…you will be tired, a tired like nothing you felt before. People won’t understand, ignore them, and listen to your body.

You are your own best advocate. Research, ask questions, and get multiple opinions before settling on what just one doctor tells you.

It doesn’t matter how old you are; you can still get blood clots!

Recovery sucks!

In many cases, blood clots can be a sneaky killer. Mine was disguised as pleurisy, which could have cost my life. I didn’t go to my doctor until it was almost too late. I had no clue it was a life threatening blood clot.

Blood clots can be deadly.

When the doctor tells you it’s a bug bite and take some antibiotics, get a second opinion!

Blood clots can kill you.

Blood clots can happen to active teenagers!

Listen to yourself. If you know something is wrong, speak up, and don’t let your doctor’s just brush it off as nothing. Or in my case, the many times I brought up the different coloring and pain, doctors just said it was healing from my Achilles tendon surgery.

It can take much, much longer than you think to recover.

Blood clots can kill you, and recovery can leave you with lots of health issues.

Blood clots hurt.

Blood clots are life changing. It was the scariest time of my life, and continues to make me worried sick that it could all happen again! Also, the chronic, debilitating pain…..18 months for me, and I’m in chronic pain most days.

Blood clots aren’t always painful. I had one that felt like a small bruise, and it was dismissed, as I wasn’t screaming. To be fair, all my other blood clots were so horrifically painful, I thought I was going to pass out, and they were still missed.

Blood clots for me changed my whole life. They made me realize life’s too short. I think all your comments taught me that I’m not alone. Recovery is long. I am on medication for rest of life, and my health issues are endless, but I’m alive. Some people aren’t so lucky.

The fear never leaves you.

When discovered, you need to advocate for yourself and find the right doctors who will listen.

Blood clots can happen to anyone!!!!!

Listen to your body. If you think there might be something wrong, stop worrying that they will think you are crazy and spend the money, and go to the doctor. I had a small pinch in my chest, that was it. That small pinch saved my life, because I knew it wasn’t right.

Blood clots can happen to anyone

Blood clots are a silent killer.

I was told that a lot of doctors missed my diagnosis – a blood clot in the brain, and inflammation in my brain and spine. They asked what led me to go in, and I just knew that I needed to go in and that something wasn’t right. I am blessed to be alive. It has changed my outlook on a lot of things in life.

I thought I was starting to have panic attacks because of the palpitations and shortness of breath. I drove to my doctor’s surgery, only to be asked, “How long have your lips been blue?” I was taken to the hospital and resuscitated twice. After 14 months, I still get the odd twinge, but I’m on thinners for life.

The recovery process is very slow, and extremely difficult, and a huge emotional roller coaster, which includes a great amount of fear. Doctors talk about the physical aspects, but the emotional side is incredibly hard. Blood clots alter your entire life, and you are not alone. If you have survived, you won.

It doesn’t always take a warm leg for a blood clot to be there. If it’s very swollen, flush red when you stand, and very sensitive to heat, cold, and water, please have it checked out. Just because my calf wasn’t warm, even with a positive D-dimer, three doctors ruled a clot, because it wasn’t warm. Yet, three DVTs were later found in the same leg. Trust your instincts. I said outright it was a blood clot, and the doctors didn’t believe me. If someone says no, it’s not a blood clot, get a second opinion to be sure. If I did, it wouldn’t have broken off and went into both of my lungs. You know your body best.

Always get a second opinion, and if there is one, there could always be another one. The first time I had two blood clots in my brain, with more tests, they found a massive clot in my lung that could have killed me. This time, they found one in my aorta, and the doctor didn’t seem worried. They gave me a very low dose of blood thinner, I saw a new doctor who ran tests, and they found that I had two more blood clots in my brain. Ask a lot of questions, and if they don’t want to answer, find a new doctor!

Being a survivor of PE made me a better person.

Blood clots kill!

Homan’s Sign is discomfort behind the knee on forced dorsiflexion of the foot, and a sign of thrombosis in the lower limb. Everyone’s symptoms are different. This is how I knew that I had a potential problem.

I was diagnosed with a PE in June with no symptoms. I tested positive for factor V Leiden, a genetic blood disorder. If you have been diagnosed with a blood clot, get tested for blood disorders!

Blood clots are life changing, and not in a good way either! Be proactive in your care. Post-thrombotic syndrome is no fun.

If you have pain or difficulty breathing and shortness of breath, get light headed and dizzy, you could have pulmonary embolisms. I had them in the base of both lungs, and DVTs from my hips to my knees in both legs. I also have factor V Leiden. I recommend that anyone who has blood clots, get checked for blood disorders, deficiencies, and if you have any symptoms of blood clots, go to the ER right away.

If you are going through recovery, hang in there. I’m a survivor, and it’s going to get better with positive energies and a positive outlook, babe.

As some have said the emotional mental roller coaster after surviving may be one of the hardest things you’ll ever deal with. Also, if you’re planning to go on oral birth control, request to get tested for any blood disorders beforehand.

The recovery process is slow, long, and scary. And sometimes we suffer from PTSD after. I didn’t realize that I did until a doctor told me that!

Blood clots happen to young, healthy people for what seems like no reason at all (Look at people like Serena Williams, Nick Cannon, and Chris Bosch). They can happen to anyone, at any time.

There is hope for healing and you are not alone,

0-BLOG SIGNATURE SARA

 

 


Reader Writs In: What is the one thing about blood clots everyone should know? Share in the comments.


What does recovery from a pulmonary embolism look like? Get more info to share in this post.


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

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.

“The Patient’s Playbook” Review

patients-playbook-cover

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.

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.