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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August 6, 2014

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

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

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

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

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

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

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

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

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

 

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April 9, 2014

In Defense of the ER

When I woke up with a headache at 4:00 a.m., and I didn’t think anything was wrong, because I didn’t have it earlier in the day. In my head’s defense, I hadn’t been sleeping and had a few long days and nights. In my doctor’s defense, I didn’t know anything was wrong the last time something was seriously wrong so I knew he would send me to the Emergency Room when I called him around 4:00 that same afternoon and told him I had blurred vision too. In my eyes’ defense, I was staring at a computer screen all day. In my doctor’s defense (again) that sort of thing never caused blurred vision before. In my defense, I knew what the outcome would be and the ER is time-consuming, expensive and sometimes inconclusive or seemingly even a waste of time. My doctor, seemingly the only one concerned about me (between him and I) by dinnertime, requested I head (no pun intended) to the ER to get a CAT scan. I did, begrudgingly, and told myself the whole way there I would tell anyone else in my shoes to go.

Hospitals never bothered me [before] so I wasn’t expecting the sheer terror I experienced when the nurse wanted to insert an IV. When asked why she said, “Just in case we have to admit you,” which completely sent me into an unexpected fit of tears. She and her summoned colleague decided against the IV and proceeded to stare at me for several minutes while I wiped the snot off my face and all over my sleeves. I went to sit in the waiting room while they ordered blood work, which – in my head’s defense – made me feel better.

Just about two hours (I consider myself lucky) and who knows how many thousands of dollars later, I had the CAT scan and was waiting on the results. The ER doctor came in and told me what I already suspected, “I don’t see a clot and I don’t see a bleed. I don’t see anything identifiable at the moment, but I am concerned about the headache.” In exasperation, I threw my hands into the air and exclaimed, “I knew I was overreacting!”

The doctor stopped shuffling papers, put down my charts, folded his arms on his lap and leaned forward, looking directly into my eyes. I stared back. I could feel the tears welling up, and I tried to focus on how kind and reassuring his eyes looked to me. He breathed deeply and leaned back again.

“This is your life being on warfarin,” he said, “You never know, you never can tell. You have things going on. You have things working against you and a history that does not put you in a comfortable place medically. It could have been a bleed. It could have been a clot. It could be something neurological. I would rather see you here on an overreaction than the way you were before. Nothing about this will ever be an overreaction. You’re a remarkable young lady. You have to take care of yourself and this is one of the ways you have to do it now.”

I stared at him and blubbered on about my story – my PE and everything I had been through in the last year or so – a job loss, relationship struggles, pain and fear and a loss of self that has still impacted me in a way I don’t recognize today. I don’t think I was uttering a bit of sense, but that doctor listened with all the sincerity and compassion he could. When his pager shrieked and a trauma was called out overhead, I knew he had to go; and he left me on the condition I could go home if I promised to 1) come back if my head was not better or worse in 24 hours, 2) follow-up with my doctor and 3) ask for a referral to a neurologist to hopefully get to the root of the problem. Only four hours after I first arrived, I collected my stuff, swallowed two Tylenol tablets and was discharged per the above contract.

My headache did not grow worse and lessened over the next several hours (with rest and quiet), but I am grateful I went to the ER. I followed up with my hematologist the next morning who confirmed I could never be sure with my clotting history and whether I was willing to or not, he was not willing to take the chance that I might have another clot. I might not get so lucky to survive the next time.

I left that ER feeling completely validated for even calling my doctor in the first place. I left feeling like I did the right thing and, aside from what could be going on with my brain, I actually left feeling like there was nothing wrong with me.

Today, I am passing that message of validation on to you. I know it is hard to go to the ER when you think something could – or could not – be wrong. I know money, time, effort and perceived consequences are the first thing on each of our minds. I know because it just happened to me.

I am here to tell you that if you have anything that causes you concern enough to wonder if something else might be going on, you are right in seeking medical attention. Do not not let anyone tell you or treat you differently. If you are worried due to breathing issues, chest pains/sensations, difficulty speaking or swallowing, loss of balance, headaches, nausea, blurred vision or lack of mobility – that is all the more reason to go. You never know. We just never know.

We become accustomed to feeling like we are overreacting (because sometimes nothing is wrong), like we always have something wrong (because a lot of times it is), like we are always sick or a complainer (it’s easy to let others make us think this way) and given what we have all been through (which is not to be taken lightly), our bodies and minds deserve better than that thinking. You deserve better than that thinking. Please, I urge you and I always will, seek the medical attention you need if you are feeling like something is wrong. If you aren’t an advocate for your health, there just may not be anyone else who is either; and the chance we have been given is just too previous, in my opinion, to let slip away for a second time.

Be well.

Share your story. Have you ever gone to the ER and found nothing was wrong? Something was wrong? Do you feel like you are overreacting to the point of not going to the ER? What has (or has not) changed your mind? Do you go to the ER more since your clot?

There is hope for healing and you are not alone,

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May 22, 2013

Into the darkness

Read the first part of my story to get caught up.

Into the darkness cover photo 600 by 600

 

They say we are only given what we can handle in this life. But, lying alone (except for the nurse who was appointed to stand guard over me every second of the night, monitoring me for even the slightest change) in the cardiac intensive care unit after being admitted with a deep vein thrombosis (DVT) in my left calf and a pulmonary embolism (PE) that traveled through my heart and lodged in my left lung, I wasn’t convinced I could handle any of it. I had unexpectedly lost my mother just this time the year before and I was pretty sure I had quickly reached my lifetime limit of “things that can go wrong, will go wrong” as I plunged into the darkness. Turns out, I was wrong about that too – I should have known.

I missed my mom terribly, but was unable to focus on anything except the extreme pain I had felt that day and still now. In the ER, I was given morphine and then a cocktail of other pain pills, which took the edge off, but I couldn’t breathe without it hurting. I was given oxygen immediately and when I asked my guardian if I could get up to pee, he instructed I could not – in any way – move and that he would help me go to the bathroom. My choices were a catheter or a bedpan. I chose the later, he lifted me carefully, sliding the pan under me and turned his back. I waited for him to leave and he finally stepped outside of the curtain, but was back within seconds after the silence returned to the room, signaling my finish. It was dark, very dark, and I couldn’t see his face, but I asked him why he never left and he said it was his sole job to keep me company. I asked him if I would make it and he said I had good doctors to take care of me. Not exactly the answer I was looking for.

I remember being there, with him, for a few days and my family coming to see me. Everyone was speaking in hushed tones and I could barely feed myself. I wasn’t hungry anyway, though. I don’t remember seeing a doctor at all and I would later find out, my whole hospital stay was a blur of memories because of all the pain drugs I remained on.

From there, I was moved to a larger ICU room, sparsely furnished except for me – smack dab in the middle – and nothing else. It didn’t sink in until later, after conversing with a friend who faithfully visited in spite of her own fears, that the room wasn’t meant for comfort, it was meant to save my life in the even that I crashed. I get chills to this day recalling just how close to death I had come.

The hospital provided a battery of tests to diagnose my conditions – chest x-rays and imaging scans to look at my lungs and heart; Doppler imaging scans to check every organ in my body for damage; more Dopplers and scans to check my legs every other day and even an MRI to check my brain.

The DVT in my leg was severe and extended from my groin area down to my ankle. There was nearly no blood flow in my lower leg, as the veins were blocked from the clot just behind my knee. The vice feeling I had. About an eighth of my lung tissue was destroyed in the ordeal and was now dead, causing my lung to collapse. Yes, it did feel like a knife stabbing.

My thoughts – and then mostly incoherent sentences – consisted of “but I’m a runner” and “I am starting a new job on Monday so I have to go.” Neither would be happening anytime soon and one would not last through the summer, much to my devastation. I couldn’t believe this was happening, to me, nonetheless.

The medical staff, once they discovered I had been on oral contraceptives for several years, concluded that was the problem and once I stopped taking it (which I already had) all of my other problems would be solved. It wasn’t until a specialist got called in – to this day no one, not even him, recalls how – and discovered that I actually had antiphospholipid syndrome (APS), an autoimmune condition that causes the blood to clot when it shouldn’t. That specialist is now my Hematologist and I am convinced between him and my primary care physician who instructed me to go to the hospital after losing his own brother to a PE, are the reasons I am still here today. I didn’t understand what was happening and the Hematologist assured me the few times I remember speaking to him that there would be plenty of time to understand once I was no longer in such a volatile state. He told me I was very sick, lucky to be alive and not going anywhere anytime soon. I spent the better part of six days in the ICU and then another four on the cardiac care unit. At 29 years old, I was the youngest one there.

My husband, Dad, sister and three girl friends that visited kept me hanging on when I was sure I was about to lose it all. I remember being scared, lonely, irritated, angry, sad and in constant, unrelenting, at times unbearable pain. I saw bugs that weren’t there, had conversations that only I remember, others that only I don’t, and sent text messages that make no sense even to this day. I was not aloud to get up except for two days before I left the hospital and when I finally did, my legs turned to Jell-O beneath my body weight. It took one of my friends and my husband to help me shuffle to the toilet only four feet away from my bed. It took my friend holding me up while I used it and a nurse helping me wipe because I couldn’t move my arm behind me. I remember being mortified, angry, scared and in terrible pain. If this was how my life was going to be, I started to have serious second thoughts about being thankful that I was still alive.

“What happened to my life?” seemed like the understatement of the year. I couldn’t remember anything, at all. I continually asked the same questions over and over and over again. “What happened?” “Why am I here?” “Why can’t I go home?” “Did somebody call my job?” “Can I run?” “Why do I need that?” “What do I have?” “Did I die?” And, except for a select few of the ones who were convinced it was birth control and nothing else, everyone answered me again and again and again, no matter how many times I asked.

The hematologist told me very little in the hospital and looking back, I am thankful because I wouldn’t, couldn’t and didn’t understand any of it at the time – and there’s been nothing but time to start to figure it out since then.

One thing I was certain of, though, I was given a second chance at life and was determined, committed, adamant that I would not waste what I had been given. On the ride home from the hospital with my husband – toting and oxygen tank and bag of pills – I wailed about how life was meant to be lived and I was given a new lease to do so starting now. It wasn’t until weeks later that I discovered I survived something one in three people do not and that, to me, is proof that I was left to live here for a reason – and maybe part of that reason is telling all of you about what happened to me.

In healing there is hope and you are not alone,

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