A Survivor Speaks: Just Remembering by Angi Amerson-Alexander

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,