How To Talk to Your Doctor about a Possible Blood Clot

Talk to Your Doctor about a Possible Blood Clot

Once in a while I get an email from acquaintances – or even strangers– describing what they fear is a symptom(s) of a blood clot in their legs. More often than not, the individual tells me they have already scheduled an appointment with their Primary Care Physician (PCP) and are waiting – and worrying – to find out what might be wrong. For many of these individuals, they have never had a blood clot before, and they want to approach their doctors with specific questions pertaining to testing and determining if in fact they do have a blood clot. And, many of these emails have concluded with, “What did you tell your doctor because I am worried he/she might not think to look for a blood clot?” I have found it is often difficult to decide how to talk to your doctor about a possible blood clot either because we don’t know what to say or are embarrassed to do so.

I always respond to these inquiries with the same information (starting with I am glad to hear you are listening to what your body is telling you) and explain that in my situation there was no time to contact a physician because by the time I realized something was wrong, I was struggling not only to walk, but breathe because the blood clot had traveled from my leg and lodged in my lung as a pulmonary embolism (PE) escalating from a manageable situation to a critical one. There was no time for preliminary discussions because I was admitted to the Intensive Care Unit (ICU) for immediate care and observation.

Still, I believe many blood clots – especially blood clots in the limbs (DVT) – are treatable before they dislodge and cause major problems to the heart, lungs or brain. If I had identified the pain in my calf as a serious and needing medical attention, I would have wondered what to ask my PCP when I was there. I would have gone in and said, “It hurts and I don’t know why,” and would still be hoping for the best possible outcome. Still, it is not always easy to say ‘It hurts’ because we often feel like we have to have something visibly or horribly wrong to see a doctor or fear being labeled a hypochondriac later – when something really might be wrong. Before my PE, I often felt like I had some sort of limit placed on the amount of times I could see a doctor with unfounded complaints before I would be hesitant to go back in.

I’ve thought a lot about what I would have said to a doctor before my situation evolved into an emergency and after doing some reading and discussing options with other survivors, I have come up with some guidelines for how to talk to your doctor about a possible blood clot. First and foremost, one should have an understanding of the symptoms of a DVT, which can be read here. It is important to note if you are experiencing symptoms of a PE, heart attack, stroke, having shortness of breath, chest pains or lost consciousness, please seek emergency medical help or call 9-1-1.

How to Talk to Your Doctor about a Possible Blood Clot
Before Your Appointment:
  • Call your PCP/Sports Physician/Specialist/etc. and request the next available appointment. It may be beneficial to say on the phone “I am concerned about symptoms A, B, C being a possible blood clot and would like the next available appointment.” If your doctor cannot work you in within the next couple of days and your symptoms do not subside or if they get worse, skip your physician’s office and head to an Urgent Care instead. You could also ask to be put on a cancellation list if you have to wait a couple of days.
  • If you have redness or swelling that is coming and going in, for example, your leg take a picture with your phone or camera to take with you in case your leg does not look the same the day of your appointment.
  • Write down symptoms you have that you are worried you may not remember on the day of your appointment.
During Your Appointment:
  • Explain your symptoms in as much detail as you can. This is where it would be helpful to pull out your picture or written note.
  • Explain why you think it may be a blood clot (especially if the doctor asks). For example, I recently had a friend say, “One of my friends had a blood clot in her lung that almost killed her and she didn’t know what it was ahead of time so I am here as a precaution.” Or you could say, “I have been reading about blood clots and a lot of my symptoms seem to fit, I would like to rule it out.” Or, “I have a history of blood clots in my family and am concerned.”
  • If you have a history of blood clots (yourself or family members), please inform your doctor. If you are taking medications that may increase your chance of blood clotting (i.e. oral contraceptives), please inform your doctor. Even if this information has previously been noted in your medical charts, be sure to remind your doctor during your exam.
If Your Doctor Does Not Agree:

I have learned that we must be an advocate for our own health and have read countless stories where someone approaches medical staff with a concern and it is dismissed as something not to worry about. If you believe you are suffering from a blood clot (DVT) and your doctor does not agree, be sure to find out why he or she does not agree. If you are uncomfortable with the explanation, you are entitled to ask for a second opinion! If you do not want to wait to seek an additional opinion, there are specific tests you can request to rule out the possibility of a blood clot. This information is also helpful to have so you can understand if your doctor is considering the possibility of a blood clot by ordering these tests.

  • Request a Doppler Ultrasound (Also called a Doppler, a scan, an ultrasound, an image). A Doppler ultrasound test uses reflected sound waves to see how blood flows through a blood vessel and is the most common method of diagnosing DVT. It helps doctors evaluate blood flow through major arteries and veins, such as those of the arms, legs, and neck. It can show blocked or reduced blood flow through narrowing in the major arteries of the neck that could cause a stroke. It also can reveal blood clots in leg veins that could break loose and block blood flow to the lungs (Web MD). This test is simple and may be scheduled at your doctor’s office or walk-in hospital lab. It should only take a few minutes to complete a Doppler and the results are available immediately. It does not hurt (unless you have pain in your limb, because they will push firmly on it to get a clear image). Do not be alarmed if your doctor orders more than once Doppler a couple of weeks a part to monitor your situation.

Although less common and sometimes unnecessary depending on your situation, you may also request or your physician may order if imaging results are unclear (test descriptions compiled from Web MD):

    • A D-Dimer Test is a blood test that measures a substance released as a blood clot breaks up. D-dimer levels are often higher than normal in people who have a blood clot. A low d-dimer test result may mean that a deep vein thrombosis or pulmonary embolism is less likely. A high d-dimer test result may not always be caused by a blood clot in the leg or lung. This is completed by a intravenous blood draw, so please note it you have a sensitivity to needles.
    • Magnetic resonance imaging (MRI) test uses a magnetic field and pulses of radio wave energy to make pictures of organs and structures inside the body. In many cases MRI gives different information about structures in the body than can be seen with an ultrasound. MRI also may show problems that cannot be seen with other imaging methods. Using MRI to look at blood vessels and the flow of blood through them is called magnetic resonance angiography (MRA). It can find problems of the arteries and veins, such as a blocked blood vessel. Sometimes contrast material is used to see the blood vessels more clearly. This test is non-invasive, but requires you to sit or lay still for a period of time as the images are taken. Some people find this test uncomfortable if you do not like small spaces
    • A computed tomography (CT) scan uses X-rays to make detailed pictures of structures inside of the body. During the test, you will lie on a table that is attached to the CT scanner, which is a large doughnut-shaped machine. The CT scanner sends X-rays through the body area being studied. In some cases, a dye called contrast material may be used. It may be put in a vein (IV) in your arm, or you may drink it in some cases.
    • A venogram is an X-ray test that takes pictures of blood flow through the veins in a certain area of the body. During a venogram, a special dye (contrast material) is put into your veins so they can be seen clearly on an X-ray picture. A venogram looks at the condition of your veins and the valves in your veins. It shows the veins in your body and whether or not they may be blocked. This test requires some preparation ahead of time and should be discussed in detail with your doctor.
After Your Appointment:
  • Follow up with any tests your doctor has ordered. If you have been instructed to seek further testing at a walk-in lab or hospital testing facility, call right away to get the hours of operation and do not delay further testing.
  • Follow up with your doctor regarding treatment if a blood clot is discovered.
  • If you are unhappy with your diagnosis, seek an additional opinion or if your condition worsens, seek urgent medical care.

Share your story. Did you request an additional test from your doctor and if so, what was it? How was your blood clot diagnosed initially? Did you visit your doctor with any concerns? What did you say to your doctor? Have you been an advocate for yourself in diagnosing a blood clot?

There is hope for healing and you are not alone,

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Into the darkness

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

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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,