July 26, 2017

When should I call my doctor?

After my blood clot, I felt like I could no longer trust my body anymore. After all, I was taking care of it – exercising, eating well and losing some extra weight – when a blood clot from my leg went to my lung and almost ended my life at just 29 years old. I was healthier than I had been in a couple of years, I was happy, and I had no other out-of-control health problems. The very last thing I expected was a blood clot, in fact, I didn’t expect one at all. If I couldn’t trust my body when it was healthy, how could I possibly trust it when I was sick, on blood thinners, and recovering from a mind-blowing event that nearly killed me? I couldn’t. That was almost as scary as surviving something that kills one in three people that it affects. Not only could I not trust my body, I also wondered if I could trust my head: How would I know if I should call my doctor during my long and difficult recovery?

In the initial days after my discharge from the hospital, I was at my hematologist’s office once or twice a week to have my INR checked. I had an appointment with my doctor every month to discuss my treatment and my recovery, and I had a lot of appointments with a variety of other specialists to fill the rest of my very miserable time with. I am very fortunate that my hematologist – and my main point of contact for my care – is very understanding and supportive and assured me early on that no question was dumb, no phone call was a waste of anyone’s time, and he absolutely expected to hear from me a lot as I went through the stages of healing. So, I figured, what did I have to lose? I called him a lot – for everything in the beginning. If I had any pain, unusual feeling, or question, I just called him. I treated it as a non-negotiable part of my treatment plan: Take your medication, go to your appointments, and call your doctor.

He always answered me in some way. Sometimes, his answer was, “That’s normal, you can expect that,” or it was “Why don’t you make an appointment to come see me?” or, one time it was, “You need to go to the emergency room right now.” That time I thought I had another PE, and thankfully, I didn’t. I did have pleurisy, or inflammation of the lining of my lung, which was nearly as painful and required admission to be treated.

As time went on, I started to learn how my doctor would answer me, and I started to learn how my body felt after a blood clot. I started to learn what was “normal” for me, what was unusual for me, and what was downright frightening for me, or sent me into panic mode. Eventually, I noticed I was calling my doctor a little less than once or twice a week, as I learned to manage my health with my own knowledge and experiences. I went from calling my doctor a couple of times a week, to calling him a couple of times a year. I now know when I need to seek help right away, make an appointment, or when I can handle a situation at home, by myself.

One of the questions I hear frequently is, “How do I know when I should call my doctor?” The answer is simple: If you have to ask, call your doctor. That being said, calling a doctor is not easy for everyone – and not everyone has a supportive doctor. If that’s how you feel, there are some things you can do to help you decide if you should call your doctor.

Listen to your body.

You may not trust your body – or you might be really angry with it after everything you have been through – but trust me, your body is smart. Listen to it. Your body is very good at letting you know, most of the time, when something is wrong. If you feel pain or have symptoms that are unusual for you, your body might be trying to tell you that something is wrong.

Work with your doctor, or healthcare professional.

Your doctor is your best resource for understanding your symptoms and what they may mean. Your doctor works for you – and you should not worry about bothering him or her. If you don’t have a doctor who you feel is a partner in your care, take steps to find a doctor who is. You, and you alone, are in charge of your body and your recovery. Talk to your doctor about a plan to manage your health. Can you call him or her? Can you send an email? Should you proceed right to the emergency room for certain things? What symptoms should you watch out for? What symptoms might be normal for you? Work with your doctor to develop a plan of action – no matter how simple – for handling your health questions. My plan was as simple as this: Call my hematologist with any questions I have.

Trust your past experiences.

This ties together listening to your body and working with your healthcare provider. Once you do these things, you will start to learn what is and what is not normal for you during your recovery. For example, let’s say you have a pain in your leg that feels exactly like your DVT, so you call your doctor, and he or she advices you to seek medical attention right away. You automatically know what to do if and when it happens again. If you have pain in your leg that hurts a lot, but goes away with rest and elevation – when your DVT pain did not – you start to learn what that pain means for your body. Maybe it means you walked too much, or worked out too hard at the gym. Simple thoughts like, “This pain is different,” or “I have never hurt this bad before,” are clues that something could be very wrong, and you should call your doctor for guidance. Thoughts like, “This feels familiar, I need to take it easy this afternoon,” or “I have felt this tired when I don’t get enough rest at night” might be clues that a particular feeling is normal for you. If you can’t remember, or if it seems overwhelming to understand your experiences, keep a journal or log book with simple entries about what you feel, when you feel it, for how long, and what the resolution is.

Some Important Things to Watch Out For  

There are some signs and symptoms that you should be aware of – especially once you have had a blood clot – and you should always call your doctor if you question how you are feeling.

A blood clot in the leg or arm (or other parts of the body) is called deep vein thrombosis, or DVT, and is dangerous because it can break apart and travel through the blood stream, leading to life-threatening problems, like a blood clot in the lung. If you experience signs or symptoms of a DVT, call your doctor or seek medical attention as soon as possible.

Signs and symptoms of a blood clot in the leg or arm (deep vein thrombosis or DVT):
  • Swelling in the affected leg, including swelling in your ankle and foot, or swelling in your arm
  • Pain in your leg, ankle, foot, or arm. The pain in your leg can feel like severe cramping, or a charley horse, and often won’t go away with your regular methods of pain relief
  • Warmth and/or tenderness over the affected area
  • Changes in your skin’s natural color (red, blue, white, or purple)

A blood clot that breaks off from the leg or arm and travels to through the bloodstream to the lung is called pulmonary embolism, or PE. A PE is life-threatening because it can block blood flow and oxygen to the lung(s). If you experience signs or symptoms of a PE, go to the emergency room, or call 911, immediately.

Signs and symptoms of a blood clot in the lung (pulmonary embolism or PE):
  • Unexplained sudden onset of shortness of breath
  • Chest pain or discomfort that worsens when you take a deep breath, cough, or even lie down
  • Feeling lightheadedness or dizzy
  • Rapid pulse
  • Sweating
  • Coughing, or coughing up blood
  • A sense of anxiety, nervousness or impending doom

If you are taking blood thinners, you might also worry about unwanted or dangerous bleeding. If you have any questions about bleeding, you should call your doctor right away.

Signs and symptoms of dangerous or internal bleeding can vary greatly depending on where in the body bleeding may occur. If you experience these symptoms – or any other symptoms that cause you concern – call 911 or seek medical attention right away.

Signs and symptoms of bleeding
  • Abdominal pain and/or swelling
  • Light-headedness, dizziness, or fainting (can result from any source of internal bleeding once enough blood is lost)
  • A large area of deeply purple skin, or bruising, especially around the chest or abdomen areas
  • Swelling, tightness, and pain in the leg or arm after an injury
  • Headache and/or loss of consciousness
  • Blood in urine or stool (black or tarry stool)
  • Shortness of breath
  • Chest pain
  • Nosebleeds, cuts, scrapes, etc. that do not stop bleeding after applying direct pressure for 10-15 minutes
  • Nausea and/or vomiting
  • Unexplained bleeding from another body cavity, including ears, nose, mouth, or anus
  • More symptoms of internal bleeding
Even though it can be difficult to learn about your body after a blood clot, there are some things that you should never ignore. In the event of a head injury – such as a bump, bruise, cut, etc. – always consult with your doctor as soon as possible for further instruction, or seek immediate medical attention. If you have shortness of breath, chest pain, or the worst headache of your life, always seek immediate medical attention because these might be symptoms of something serious. 

Managing your health after a blood clot is not easy, and there are many things to think about, consider and worry about. In time – as you learn from your experiences and your healthcare provider – it does get easier and eventually, I hope you will find that you know your body very well. While it may take some time to get there, you too can manage your health after a blood clot. In the meantime, if you wonder, always make the call. Your health – and perhaps ultimately your life – are always worth making the call.

There is hope for healing and you are not alone,

Reader Writes In: How do you decide when to call your doctor? Is your doctor a partner in your care? Why or why not? How do you manage your health after a blood clot?

There are three symptoms you should never ignore. Find out what they are.

Are you worried that you might have a blood clot? Here is how to talk to your doctor.

Connect with BCRN on Facebook and in our private Group.

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March 29, 2017

Patient Story: A Double Whammy by Ruth

This patient story “A Double Whammy” was written by Ruth Work for the Blood Clot Recovery Network Blog.

I am a 51-year-old clinic nurse with rheumatoid arthritis (RA). I’m on those nasty meds that keep me moving, but they also make me immune suppressed. At the beginning of August 2016, I was feeling run down, and I thought it was my allergies acting up. I took my RA meds on a Friday night, and I woke up the next morning feeling like I’d been hit with a mac truck, like you do when you have influenza. I went to urgent care, and I was diagnosed with a sinus infection and sent home with an antibiotic. The next morning, I woke up feeling worse, my fever had gone up and the lymph nodes in my neck had blossomed. I called the Urgent Care with this update and was instructed to go to the ER.

After three hours in the ER, I was admitted with pan-sinusitis (all sinus cavities infected) that had gone septic. The next day, I had a CT scan of my neck, which showed one of the lymph nodes suspicious for malignancy. The next day, I had more scans looking for other malignancies. On day three, I had surgery to remove the suspicious lymph node. I finally got to go home on day four to await pathology results.

During this hospitalization, the doctors did everything right. I was on birth control pills for menopausal symptoms, and they took my pills away. I received Lovenox injections, wore the Jobst compression stockings, and had the pressure booties following surgery. They were being proactive which I thought was overkill at the time. The surgeon called me the next day and told me the local pathologist was leaning towards a lymphoma diagnosis but to confirm, they were sending my specimen on for further review.  In the meantime, I was instructed to make an appointment with the oncologist so we could get things rolling after the final pathology report came back. I saw the oncologist on August 12, 2016, and I was told I did not have lymphoma! What a blessing! But, four days later, I was huffing and puffing just trying to make my bed.

I called my primary doctor who instructed me to go to the ER to check things out. That day, August 16, 2016, my life changed so drastically! A positive D-Dimer and CT revealed extensive bilateral PEs. I was admitted again, started on Lovenox shots again then started oral Eliquis. I was sent home and told to do nothing. I was terrified! I was afraid to even sneeze for fear I may throw a clot and die. As many others have commented, even getting up to use the restroom was a major feat. As a nurse, I was familiar with DVT and Pes, but I was not aware at how long a recovery it can be. It has been a very slow go for me. I no longer make plans, I make goals. Some days I make my goals, some days I don’t. Little things like walking to the mailbox was a huge accomplishment. I returned to work on a very limited basis last September. My doctor was very protective, which I greatly appreciated. Unfortunately, I was not able to increase my hours to my normal work schedule in November. I was so fatigued, continued to be short of breath, and heart palpitation had also set in. Since I wasn’t getting better fast enough, I was placed on a ‘layoff’ status since I was not at this job a year yet, and I was not protected by Family Medical Leave Act (FMLA). I was put on ‘layoff’ for 90 days, and if I was not placed in another position by the end of 90 days, my employment would ‘conclude.’

I just can’t believe everything that has happened these past few months! It was the perfect storm, how one issue led to another issue. Due to the sepsis, I had to go off my RA meds so my RA symptoms returned. Due to the blood thinner, I can’t take any anti-inflammatories. I have recently been able to start a different RA med, which is not helping. I’m trying to be patient and give it time to work, but I’m feeling very down lately. I’m sure it’s a combination of the slow PE recovery and the RA symptoms, a double whammy. I’m not able to do the things I used to, don’t have interest in many of the things I used to, and with anything that takes a lot of energy, count me out. It saddens me to lose my nursing job, but I understand why. How can I take care of my patients when I can barely take care of myself? I feel like I’ve let my co-workers down, and I’ve let my family down. Six months later and there are so many things I just can’t do. I guess I’m not a very patient person, but am trying to be. I’m usually a go getter and this has shaken me to my core.

I’ve learned that PE recovery isn’t just a physically recovery, but an emotional recovery, which I was not expecting. Through it all, I continue to make goals and I keep trying. My husband and I love to travel and being told I couldn’t travel for six months after my PEs has been so hard, especially with most of our family being out of state.

To celebrate making it to my six-month anniversary, we flew to see our kids. I was so scared, but determined. I knew what I needed to do, what not to do, what to watch for, but I was still scared. What if I got sick again? I am happy to share, our short flight to and from our kids and grandkids went great! I was really nervous before we left because I had bronchitis the three weeks prior to our trip. I kept thinking I was going to be fine by the time we left, but I can tell my lungs have changed. The day of our flight, I went to the doctor, the pharmacy, and then the airport.  With an antibiotic, steroid and inhaler on board, I made it. We had such a great time! I had the same nap time and bedtime as our grand-daughters, but that was okay. What a blessing to be with family again.

I went off my Eliquis after we returned home, and I have noticed I feel better since going off it. I seem to feel less fatigued. I had my genetic testing labs drawn last week, and I see my hematologist tomorrow to review the results. Due to my latest illness, I had to go off my RA meds again, and I am starting a new injection tomorrow. We will see if this one is more beneficial. Will see what happens next. I am taking it one day at a time!

My journey continues, but I am here for a reason. God has a plan for me and I will continue to take life one day at a time. I’m hoping to look back at this all a year from now and realize how far I’ve come, but right now, it’s still hard.

Reader Writes In: Has anyone else dealt with PE’s and RA? Share in the comments.

Editor’s Note: Thank you, Ruth, for sharing your story with BCRN. Connect with Ruth, 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.

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March 13, 2017

Hope: A Special Message for You During Blood Clot Awareness Month

Nearly five years ago, my life changed forever when I suffered from a blood clot in my leg and in my lung. I went from being an active runner to needing an oxygen tank to breathe. I spent several days in the hospital – my life in the balance – while doctors tried to figure out what was wrong with me. Up until that time, I thought blood clots only happened to old people who were sick, or who weren’t able to move around very much. I was 29 years old, not 89.

March – Blood Clot Awareness Month – serves as a prime opportunity to talk about blood clots. Each year, as many as 900,000 people a year are affected by blood clots in the U.S. alone. If a blood clot starts in your leg as mine did – also known as deep vein thrombosis or DVT – and then travels to your lung – also known as a pulmonary embolism, or PE – it can kill you. About 100,000 people die every year due to a blood clot. It can also cause damage to your vital organs, like your heart and lungs. Blood clots – both in my leg and in my lung – were the most physically painful things I have ever experienced in my life. Quite frankly, it felt like I was dying – maybe because I was. The scary thing is, I didn’t even know that I was at risk for a blood clot, or that one could happen to me.

Know Your Risk for Blood Clots

Many things can place you at risk for a blood clot. Some of the major risk factors are hospitalization or surgery, hormonal birth control, pregnancy, treatment of menopause symptoms with estrogen, traumatic injury to the bone or muscle, a family history of blood clots, and sitting for long periods or best rest, just to name a few. Mine was caused by estrogen-based birth control and also the clotting condition antiphospholipid syndrome, which I will have to treat for the rest of my life. If you don’t know if you are at risk for a blood clot, find out right now. Speak with your doctor about your risk, and learn more about how you can prevent blood clots. Blood clots are preventable, and even treatable if detected early.

Know the Signs and Symptoms of Blood Clots

Just as important as knowing your risk for blood clots, is knowing the signs and symptoms of blood clots. I had no idea that the pain I felt in my leg – it felt like someone had the fleshy part behind my left knee in a vice that kept getting tighter – was a symptom of a blood clot. It hurt when I walked, the pain radiated down my leg to my foot. The pain did not go away with rest, elevation, ice, or even Tylenol. I did not know – and this is the scary part – that my inability to lay down flat, take deep breaths, or speak in full sentences was a sign of a life-threatening blood clot in my lung. Thank goodness, my primary care physician did, and he instructed me to the nearest Emergency Room without delay. I tried to live my life normally for two days before I went to the hospital, barely able to walk or breathe by that time. The admitting physician told me I would not have survived for a third day. If you don’t know the signs and symptoms of blood clots, learn about them right now.

I was in intensive care for several days as doctors worked to figure out why I was so sick. They worked to stabilize my heart, my lungs, my breathing, and various levels and counts in my blood. I was discharged with a wheelchair and an oxygen tank, and I thought it was all over. What I did not know was that my journey had really only just begun. I spent a total of two years recovering from the physical damage that was done to my body, and nearly another year recovering from the emotional damage that was done to my mind.

Recovery: Not Just a Physical Journey

The emotional side of recovery is what I want to talk to you about this March. It’s the part that gets left out most often, if not entirely ignored in some cases. Sometimes, people don’t understand. Even people that we know and trust, like our family, our friends, maybe even our doctors.

People ask me all the time, “How did you survive?” To be honest with you, I have spent years thinking about my answer to this question. First, I had to ponder, did I really survive? People survive physical things that push them to their limits every day – floods, fires, animal attacks, being lost in the wilderness, and car accidents, for example. I believe some people even survive illnesses and diseases. After thinking about these types of situations versus my own, though, I don’t think I actually survived my blood clot – not in the same way. Surviving my blood clot was completely out of my hands. It was in the hands of my doctors, and perhaps even more importantly, a higher power – for me, it’s God – who wanted me to still be on this Earth. You see, I didn’t actually understand I might be dying, so in some respects, I couldn’t make the conscious decision to survive my ordeal.

What I did was overcome. After my pulmonary embolism, life became brutally unfair, and I dealt with a lot more than some people will ever have to deal with in their entire life. I lost a lot, nearly everything, and I experienced grief unlike any I had ever felt before. I lost my friends, my job, my medical insurance, my self-esteem, and my confidence – to name just a few things. I was in more debt than I could have ever imagined, sicker than I knew was even possible, and the blows just kept coming one after the other. I dealt with them one by one, battle by battle, fight by fight. Everything was a fight, it seemed. I tried my hardest to do what I could to improve my situation. Sometimes it did improve, sometimes it didn’t. Sometimes it got worse. Sometimes, I found, I had to accept the help of others to be able to help myself.   

What I did not do was give up, not completely. Now, this is not to say I didn’t throw in the towel on certain days, weeks, or even months, and swear I was done with it all. I did that. I did that a lot during my recovery. Yet, somehow, someway, I never gave up completely. I always found something to believe in. Even if that something was the thought that it couldn’t possibly get any worse. Then, when it did get worse, I thought, “It can’t get any worse than it is right now. Eventually, it has to get better.” My dad told me the same thing, and I clung to that belief. He told me, “Someday, Sara, it all has to get better.” A few important things kept me going when I gave up on myself – my family, my dogs, music, and my writing. Without them, I would not be where I am today. 

Hope: A Special Message for You

Through all the loss and heartache and heartbreak, I always told myself there was something better on the horizon. The way I looked at it, if there wasn’t, then why was I still here? Back then – during those first weeks, months, and years of recovery – you could have never convinced me that I would see better days. Yet, deep inside my heart, I believed there were better days ahead, even if it seemed like a child’s fairy tale at the time. That tiny, tiny ember never stopped burning, and I never stopped believing. I think that’s called hope. Hope for a better tomorrow, for less pain, for health, for wellness, for love, for peace, for forgiveness. Whatever it is that you need, there is hope that it will one day come to you. 

I am a different person than I was before my blood clot. I don’t think someone like me – or you – go through a life-threatening illness and comes out the same on the other side. I also don’t think a person can understand that unless they have been through it themselves. This is the part of Blood Clot Awareness that is important for me to share: Surviving, overcoming, or managing a blood clot is life-changing.

The second this that is important for me to share with you is: There is hope. There is always hope. Even when you hurt more than you ever thought possible, cry more than you ever thought you would, have reached the end of your rope, lost everything, are alone, or have a broken heart. Even when it’s all over and you have nowhere to turn – there is hope. There is always hope. Find something – no matter how small that something is – to cling on to, and cling to it with all of the strength you have left. Whether it be God, your spouse, your parents, your children, your pet, yourself, your garden, your journal, your favorite song, your favorite book, your home, your memories, your dreams – hold on to it and don’t let go. Don’t ever let go of hope. If you can’t find something to cling to, here it is: There is hope.

There is hope for healing and you are not alone,

 

 

Reader Writes In: What is the hope that you hold on to? What is one thing you want to share during Blood Clot Awareness Month? How did you survive or overcome a blood clot?

March is Blood Clot Awareness Month (BCAM). Get the information that everyone needs to know.

Want more BCAM information? Find out why blood clot #AwarenessMatters.

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February 8, 2017

Patient Story: Running Down A Road to Blood Clots by Rachel McCulloch

This patient story “Running Down A Road to Blood Clots” was written by Rachel McCulloch for the Blood Clot Recovery Network Blog.

It was October of 2015 when I got to run one of the biggest and most important races of my life, which was the Nike Women’s Half Marathon in San Francisco, California. The day of my race was amazing, inspirational, and in the end, I finished in pain with a knee injury. Flash forward to January of 2016, the pain had started to slowly intensify in my left knee, and I couldn’t take it anymore. After visiting my orthopedist, it was determined I had torn my meniscus and would need to have it surgically repaired. I was scheduled for arthroscopic surgery on February 2, 2016.

I was told it would be a super easy surgery and even easier recovery. I went into surgery and came out with no complications and feeling pretty good. The day after my surgery would be the day my life would change forever.

I woke up that morning with a very swollen foot and calf. I didn’t think anything of it, and attributed it to the surgery and the wrap that was protecting my sutures. I brushed off the swelling and went to my first physical therapy appointment that afternoon. After my physical therapist assessed my knee, she told me she was more concerned with the swelling and redness in my calf and foot.

My physical therapist told me I needed to go to the emergency room. My dad drove me straight to the ER and after being taken back for an ultrasound, it was discovered that I had a deep vein thrombosis, or DVT, in my calf. I was immediately put on Eliquis. I was able to go home after a few hours in the emergency room, but I had to go back the next day with shortness of breath and dizziness. After having a chest cat scan done, I was diagnosed with multiple blood clots in my lungs and was admitted to the ICU for further observation.

I remember clearly that first night in the hospital as I reflected on my life. In a matter of a few months I had gone from a very healthy active 29 year old woman to a very sick individual facing a life or death situation. I kept thinking, “How could this happen to me?” The doctors were able to run blood work in the ICU, which eventually revealed the true cause of my blood clots to be factor V Leiden, a genetic blood clotting disorder.

“Wait, I have factor V Leiden?,” I thought, “The same disease my grandma and grandpa have.” Why had this not been found earlier on in my life? Why had I not taken any precautions? What if I wouldn’t have run that race at all? Then maybe I wouldn’t be in this situation.

All of the whys and what ifs won’t change the fact that I had this happen to me. My life has changed forever, but I don’t look at what happened to me as a negative. I try to always remain positive.

Life is a precious gift that can be taken away so fast, it’s best to look at all of the good things in life and put the negative stuff behind us. The one question I get asked all the time is if I still run, and of course, the answer is yes.

Editor’s Note: Thank you, Rachel, for sharing your story with BCRN. Connect with Rachel, 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.

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October 11, 2016

“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.

Filed Under: Educate, Empower, Encourage, Enrich Tagged With: , , , , , , , , , , , , 10 Comments
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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