Lena Welch was diagnosed with a pulmonary embolism and factor V Leiden in 2008. She has participated in support groups for each condition.
Creating Your Medical Team
Pulmonary embolisms are very dangerous, and recovery from one will take a diverse medical team. The team of medical professionals that you will work with will change as you move from diagnosis to recovery. This article will cover the large variety of people that a pulmonary embolism patient will meet along the healing journey.
Many people with a pulmonary embolism do not get to choose the doctors that initially treat them. Because pulmonary embolisms are very dangerous and often lethal many people start their treatment in an emergency room or ambulance. While you often can't select who works with you in the emergency room, it is good to know about the different specialties that work with patients with this condition. Each type of professional has a different skill that can be added to recovery.
As a patient, it is recommended that you learn about the different professionals so that you can pick out a winning team to continue your treatment throughout recovery and beyond. Depending on your needs and symptoms your team may look very different from someone else's team. This article will be a summary of some of the specialists and professionals that you may encounter.
Emergency Medical Services: The First Line of Care for Pulmonary Embolism
Many people do not have any signs of a pulmonary embolism until it is a life-threatening situation. These patients may collapse or have symptoms that are severe enough to warrant calling 911 for an ambulance. This group will work with an EMS person. This medic will be responsible for life-saving measures and/or stabilization until the patient reaches the hospital. EMS may contribute to diagnosis.
If you have a condition that predisposes you to clotting or if you have a history of clots it is recommended that you wear a medical ID so that EMS will know to take measures to treat clots immediately. This bracelet can also alert EMS as to any anti coagulation therapies and emergency contacts.
The ER Doctor
In the emergency room you will meet a number of different medical professionals. Once you have been checked in and have gone through triage you will likely be assigned to an emergency room doctor. Emergency room doctors have to have a broad base of knowledge, be able to handle the serious, fast pace environment, and have special emergency medical training. This doctor will be responsible for making sure that you are stable, prescribing tests and evaluations, and giving you your final diagnosis.
In order to get the best care possible, it is recommended that you call your primary care physician while you are in route to the emergency room. Your doctor can share information with your emergency room physician. This information will help in your diagnosis and treatment.
Once you are stable and have a diagnosis, you will either be sent home or you will be assigned to a ward. Make sure to get all of your files from ER. I suggest getting discharge instructions, any studies or films, and diagnosis notes. This information may be useful further down the road.
Spiral CT scans with contrast dye have become the most common way to diagnose pulmonary embolisms. The person who will take your chest xray and perform your CT scan will be a radiology technician. These individuals have had special training in a variety of medical imaging techniques. They can not diagnose your PE nor can they prescribe a CT scan. These jobs are left to the emergency room doctor and the radiologist who will read the CT scan.
How a CT Scan Works
Pulmonary Embolism CT Scan With Contrast Dye
The radiologist will view your diagnostic images and diagnose what he or she sees in the films. A radiologist is a medical doctor who specializes in interpreting CT scans and other types of medical images. This diagnosis will then be passed on to your ER physician or another physician who is treating you.
A hospitalist is a doctor that is very similar to a general doctor, family practitioner, internist, or any other doctor that practices in a broad range of conditions. The hospitalist works in a hospital and makes rounds to all of the patients in the hospital. This doctor will collaborate with any specialists, nurses, or therapists that may be working with your case. This doctor will also help to plan your discharge and forward any information to your typical doctor. Your hospitalist will be your case manager for your hospital stay and will help you understand and treat your condition.
Ultrasound Test for Clots
A pulmonologist is a doctor that specializes in diseases and disorders of the lungs. The type of doctor can evaluate your lungs after a clot to assess any lung damage. This doctor will also help you to determine the cause and treatment of any residual breathing problems during recovery. Many people with clots never see a pulmonolgist as the clots, not the lungs, are the main problem. If there are continued problems with breathing, a pulmonolgist is the specialist to ask for.
Hematologists are trained in diagnosing and treating issues and disorders of the blood. This can be a very important doctor to add to your team. Many people with clots do not know why they developed clots. A hematologist can test for clotting conditions that may have contributed to your clots. These tests may help you to discover why you have a pulmonary embolism and will help you to determine the length of time that you will remain on warfarin.
A hematologist is also a great person to ask about any of your anticoagulation therapy concerns. Warfarin (Coumadin) and Lovenox will both be familiar to this specialty and will be a huge help in pin pointing any problems that you may be having staying within your therapeutic range.
If you have a clotting condition, your hematologist will help you to decide if you wish to remain on warfarin or another anticoagulant. She or he will also help you determine how to fly safely, have surgery, have a baby, use contraception, or any other life issues that may come up that may cause clotting or bleeding. Your hematologist will be useful for the rest of your life. Hang on to that phone number as he or she is the one to call whenever you are worried.
A cardiologist works on the heart. Unfortunately, pulmonary embolisms frequently cause heart damage due to the amount of work the heart must do to push blood past the blocked areas in the lungs. A cardiologist will often perform an echocardiogram (heart ultrasound) to get an image of the heart. This image will show if the heart has become enlarged.
(Depending on the type of echocardiogram, the cardiologist may be able to check for holes in the heart wall. These holes are fairly common. The problem is that the holes can allow clots to easily pass through the heart. This can allow clots to bypass the lungs and enter the brain. If you have any medical history that suggests that this may be an issue, speak to the cardiologist or hospitalist that is arranging this test.)
The cardiologist will also monitor your EKG, blood pressure, and your heart rhythm to ensure that everything is healthy, or, at the very least stable and healing. Having a healthy heart is one large step to going home safely from the hospital after a pulmonary embolism.
The phlebotomist is the person who draws and runs tests on your blood. After a pulmonary embolism you will become very familiar with this person. Blood tests are vital to your diagnosis. After you are diagnoses, you will receive a blood draw about every 2 hours for the first few days. This ensures that your levels of heparin are correct and will also help you to obtain a therapeutic level of warfarin. Often you will see a number of different phlebotomists as many different ones typically work at any given time.
You will see a lot of nurses during your stay. One particular type may be useful to you, the IV nurse. This nurse has specific training and tools to assist in starting difficult IV lines. Some people are very difficult to get an IV on. Also, after numerous days in the hospital, veins tend to get used up. If you have a difficult time with IVs, ask for this special nurse.
Nurses will be everywhere during your hospital stay and at your doctors' offices. Nurses were one of the most helpful medical personal that I got to know during my hospital stay. This group is well trained in bedside manner. They can interpret doctor speak for you and recommend where to get resources or information. If you would like to see a specialist your nurse can relay this information to a doctor. Your nurse may also be responsible for helping you with toilette activities, dressing, and general comfort. The nurse can also train you on Lovenox injections. If you are in pain or having problems breathing you will want to talk to a nurse. As you can see, nurses are indispensable.
A nurse practitioner has much of the same training as a generalist doctor. Each state has different rules about what a nurse practitioner can do. Often they are able to treat and diagnose simple illnesses. A nurse practitioner may be the person who manages your warfarin after discharge. Also, many doctors' offices are using them for intake and simple care. Don't be surprised if one takes care of you at some point. The great thing about this group is that they are well trained in bedside manner. They can make sense of a lot of doctor jargon and are very skilled at putting a patient at ease.
Social workers understand the workings of benefit systems and available programs for individuals. You may meet one when discussing how you will be paying for care or how to navigate your insurance. Sometimes they can be useful in planning discharge, arranging home services, and obtaining uncommon medications like Lovenox.
After a pulmonary embolism you will be on a number of medications. You want to make sure that your pharmacist is aware of all the medications that you take both new and old. If you use vitamins or supplements, talk to your pharmacist about these as well. Your pharmacist is trained in medication: how to take it, when to take it, side effects, and reasons for each drug. If you have problems this is who you will call. The hospital will also have one on staff. If you need help or have questions about medication or its side effects this is who you will want to find.
Warfarin is a tricky drug. Pharmacists will be able to tell you how to cope with its side effects, what to expect, and how to cope with missed doses. If you have a stomach bug or change in medication the pharmacist should be notified so that you can determine the best plan for future doses. Many coumadin clinics have a staff pharmacist that manages patients. If you can find a clinic that has you see a pharmacist that specializes in anticoagulation you are very lucky.
Speech Language Therapist
A speech language therapist is rarely on a pulmonary embolism team but some people find one to be useful. This type of professional can train you in breathing exercises that can help you speak and exert yourself again with ease.
Primary Care Physician
This is a doctor with many names: generalist, internist, family practitioner... This is the person that will coordinate and interpret your alphabet soup of doctors, tests, and medications. Once you are out of the hospital this person will make any referrals that you need for specialists. This person often interprets findings and can give you opinions about what the specialists say about a test result or treatment. Many insurance companies require you to have one of these doctors. This doctor often can manage your warfarin, although many people find that a Coumadin clinic is more skilled in this area.
Your insurance may have a nurses hotline for you or may assign you a case manager. Use this service whenever you are overwhelmed or confused. Often they are staffed 24 hours a day. When you don't feel like you have all of the answers, call the nurse and ask. This is an underused, very useful service.
Counselor or Psychologist
A lot of mental stress and damage happens with a clot. Many people have survivor's guilt or suffer PTSD. A year of recovery can be very hard to cope with. One of the best resources one can have is counseling. Don't underestimate it or think it makes you a wimp. You just had a life-threatening condition; you may want some extra coping skills.
Pulmonary Embolism Recovery
Pulmonary embolism recovery is a long, process. If you need additional information about recovery, please read my article on this topic. It chronicles my experience with recovery and goes over the stages of recovery. It also has a very active comments section with over 300 entries from other people who have experiences with pulmonary embolism treatment and recovery.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Eleanor R on February 09, 2019:
This site has a lot of useful information. I was admitted to the hospital with chest pains and severe shortness of breath one week ago, late at night. I was in the same hospital in October when my potassium went to 6 and it was ,of course, an emergency. The emergency room doctor knew there was something wrong with my lungs but was unable to run a cat scan of my lungs, with contrast, because my kidneys were bad. This time, they were able to run the test.(finding 2 P. E. blood clots in my right lung) I was on an airplane trip and then a long bus trip so I guess this was the cause.Also I was in the Colorado mountains and had a hard time breathing. I am at home now waiting on additional office visits from my family doctor and probably a blood specialist. I am on Xarelto and I feel like my world is falling apart. I know at 73, my survival rate might be low. Thanks for having such an informative page.
Dawn M. on July 04, 2018:
I am 46 years old and was diagnosed and admitted to the hospital with PE on 6-21-18. I had severe chest pain in addition with symptoms progressing rapidly of needing help to walk(left leg only), getting up/down.l was discharged on 6-23-18,taking Xarelto and waiting on the results from my hematologist. This information has beyond helped me with "what's next"questions,personal concerns toward recovery and etc. Thank you, for sharing your story and making my road to recovery more clearer.
Kim c on October 05, 2017:
New diagnosis of PE. Glad to find this site.
Kevin Hemblin on August 18, 2017:
I can not find a pulmonary surgen ,with my blood clot ,have a ivc tube implented .