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.

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October 29, 2014

You Survived a Blood Clot…Now What?

 

When I suffered from a DVT and PE in May 2012, it was completely unexpected and unlike anything I had ever experienced before. I had never been ill, never been to the hospital, or had surgery. I was not prepared for the physical pain and long process of recovery. I was especially not prepared for the emotional and psychological burden of such a traumatic event. Every aspect of my life was changed as a result of surviving a blood clot. But, now that I survived a blood clot, what was next? Here is what I have discovered during the recovery process that is important for recovering, healing and ultimately moving on with the gift of life we, as survivors, have been given.

Do not let anyone tell you what you should or shouldn’t do.

The words should and should not have become a detrimental necessity of the English language so it seems. It’s toxic, it’s invasive and it seems we all do or say it to some extent. I know I am guilty of often thinking “I shouldn’t feel this way,” “You should find out about,” or “I should have.” What’s the big deal with should, you ask? It’s a one-way fast-track guilt-trip seeded in self-doubt, to say the least. By dwelling on our shortcomings and failures (which is what we do when we say should), we tend to not look for solutions or take the necessary steps for action to improve our situation.  Do not let anyone, including yourself, tell you what you should or should not be doing when it comes to your health. If you wish you would have  done something differently (for example, ask more questions from your doctor in the beginning), you may say “Next time I will” or “In the future, I plan to” or “At my next appointment I will ask what this means for my overall health.” Take steps that help you to ultimately feel better about yourself and your health. And when it comes to someone else and his or her treatment – you are not them and he or she is not you. We may face common issues or diagnoses’, but at the end of the day, only you and your medical team can decide what is right for you.

Find a medical team.

While I do believe that one doctor can make a difference – even save a life – I also believe it is important to have a medical team to treat you after surviving a blood clot. And, in reality, you probably already have a team forming. Treating a blood clot is not simple by any means and while your hematologist or general practitioner or vascular surgeon may be your main point of contact for follow-up care, keep a team of professionals at your disposal. This way, when something comes up (or goes wrong) you have a team of varied specialties and therefore hopefully talents) at your fingertips already.

Here is what my medical team currently looks like as an example. I have a hematologist who handled my case in the hospital. He is my primary contact for managing my blood, antiphospholipid syndrome, warfarin management, and anything new that may pertain to my blood or ongoing condition. For everyday problems (or what I think are everyday problems (like a sore throat), I start by seeing my Primary Care Physician who is a DO. I regularly visit the outpatient lab at the hospital to have my blood drawn to check my INR levels. I also have a rheumatologist to handle any current or new autoimmune concerns (at the direction of my hematologist) and I have an endocrinologist to monitor what has been a lifelong thyroid condition. I also have a pharmacy that I use consistently and am comfortable asking the pharmacists questions about over-the-counter or prescription interactions. Even though I do not see all of these specialists all of the time, they are there if I need them or have a concern. I have built a team I am confident relying on if I need something or have a concern.

Find and build a team of doctors you trust your health to. For a list of common specialists seen after a blood clotting incident, visit here.

Gather your resources.

Just like building a medical team is important, it is also important to have a pool of resources to help you through the recovery process. This could include things like books, websites, personal contacts, and in-person or online support groups; not to mention things like assistance with food, housing, insurance, prescriptions, and medical expenses. What people often do not understand is that the effects of a blood clot are devastating and often far-reaching.

When I suffered from a blood clot in 2012, I was not prepared for the fallout. I lost my job, my insurance, my income – everything – and I was not prepared for the financial, emotional, physical, and emotional fallout. I already didn’t feel good and on top of it all – I lost it all. That is not something one can easily rebound from. I began gathering my resources from the beginning. I inquired about financial aid at the hospital (you would be surprised most people qualify for something), searched for prescription assistance programs, asked for help in searching for jobs, let my family help when they were able, cut the cable and phone bill, etc. Anything that I thought would make a difference in my situation and relieve the pressure of trying to live with a debilitating injury/illness, I did. Resources exist and yes, many are hard to obtain, but there are some out there. If you can’t buy food, visit a local food pantry or church. If you need help keeping a roof over your head, search for a housing assistance program in your area. If you can’t afford your medication, ask your doctor’s office if they have a social worker available to help you navigate the hurdles. This is not to say any of this is easy, but it is at least worth gathering what resources you can when you can.

Build a support network.

I will be the first to tell you, people generally do not understand first, what a blood clot is, and second, what recovery is like. It is important to start building a support network early on. Searching for my own support during my recovery is how Blood Clot Recovery Network began. It is crucial that you reach out to other people who can relate to what you have been through – because they have been through it too. But, even if you are not comfortable reaching out to people you do not know, build a support network of people who care about you be it family, friends, fellow survivors, and an online support group. You can join BCRN’s private Facebook group. Having at least one other person to support you unconditionally in your recovery is important. If you don’t have that person in your life, please find support here, at BCRN.

Recognize your recovery is expansive. And listen to your body.

Recovery does not happen overnight – or sometimes even days, weeks, or months after a PE and/or DVT. Physical recovery from a blood clot takes weeks, months, or sometimes even longer. Physical and psychological complications can be long-lasting and far-reaching. At the beginning of my recovery, I wanted to “get better” right away, and it was hard for me to understand why I didn’t feel better in a week or two – or even a month or six months or a year down the line. Recovery takes time. And your body is very good at telling you exactly what it needs – or does not need. Throughout your recovery, listen to your body. If you try to go back to work, walk around the block or go back to the gym and you are struggling with fatigue, more complications, or pain – your body is probably telling you to rest. A DVT and especially a PE causes micro-damage, sometimes to organs like the heart or lungs,  that the body has to heal. Healing takes a tremendous amount of resources and energy from the body.

Put yourself first.

For the first time in maybe my whole life, I had to learn to put myself first during my recovery – and that was not easy to do. I had to say no to things like meeting up with friends for dinner, a phone call to catch up, cooking, cleaning the house, and running errands. I had to say no to things that made me unhappy or uncomfortable – including people who did not support me during my recovery. It was very hard to put myself first, but it was a necessity. You have to come first during your recovery. Learn to say no and if you have things that need to get done in a given time period, ask your support network for assistance or advice. As you begin to heal, you can start to do things that you used to do or take on more tasks, but in the beginning, don’t be afraid to say no, or yes, and focus on yourself.

Work on finding your new normal.

Everything changed after I survived a blood clot and finding my new normal is an adjustment I am still working on to this day. Even more so than adjusting to what is the new normal, though, is recognizing that things can no longer be the same as they were – because I am not the same person coming out of this survival as I was going in. I have faced more pain, fear, uncertainty, and failure than I ever thought possible. I have survived something many people do not. I have to live with the burden of a lifelong and complicated illness that I am still unsure of what the outcome will be. Do I have to give up the life I loved and the things that made me happy? No, I do not believe I or anyone does, but I do have a new perspective on life that is different than the one I had before. I have different limits, different expectations, different fears, and a new appreciation for the life I have now. A blood clot changes everything. Give yourself the time and patience you deserve to adjust to that fact.

Never, ever, ever give up.

There is hope for recovery. Just over two years out from my blood clot, I consider myself physically recovered although I still face complications from time to time and will always have to manage my medication and risks that come with that. I still face the emotional burden of what happened to me, but I am working on it little by little. I wanted to give up so many times during my recovery, but somehow, I always managed to hope for a better tomorrow. I am passing that hope on to you. You can recover. You can make improvements. You can find support and love. Find something you are passionate about and keep your sights on a goal. For me, if I can help one other person going through the struggle of recovery, I know my own struggle was worth it. Find what makes you happy, what drives you – your children, your family, your career, your pets, your love of music or art, your creativity, your friends – anything – and hang on to the hope that in that happiness, you will succeed.

There is hope for healing and you are not alone,

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August 27, 2014

Your Ongoing Care Specialist Guide

Facing recovery from a DVT and PE can be overwhelming, scary, and very uncertain, to say the least. Which doctor should you see for what and when? There are so many options available and diagnosis, treatment and procedures vary greatly from one person to the other. Here is your Ongoing Care Specialist Guide from BCRN.

Primary Care Physician/Provider (PCP)

  • Role: The primary care physician is also your family doctor or main point of contact for most undiagnosed health concerns. He or she is the place where you often begin either to diagnose a problem or return for ongoing care. The care of a PCP is not limited by cause, organ system, or diagnosis and may also refer you to a specialist. A PCP may be an MD (Medical Doctor), DO (Doctor of Medicine) or NP (Nurse Practitioner)
  • Benefit: Many patients continue visiting their PCP for medication management and regular INR testing. A trustworthy PCP is also beneficial to have as a starting point for any new medical concerns that may arise during your treatment.
  • Personal story: I credit my PCP with saving my life because he was immediately able to identify (via phone nonetheless) the pain in my leg and the pain in my side as a DVT/PE and instruct me to go to the ER immediately. While I do not see him for my ongoing INR and warfarin management (because he was more comfortable with me seeing a specialist due to the complexity of my case), he is integral in my care and remains my main point of contact for everyday concerns and illnesses.
  • More: Find more information at the American Academy of Family Physicians.

Hematologist

  • Role: Hematology is the study of blood in health and disease. It includes problems with the red blood cells, white blood cells, platelets, blood vessels, bone marrow, lymph nodes, spleen, and the proteins involved in bleeding and clotting. A hematologist is a medical doctor who applies this specialized knowledge to treat patients with blood conditions. Most hematologists are also trained oncologists (specialize in treating people with cancer)
  • Benefit: Any person unsure of why he or she experienced a blood clot, should consult a hematologist for further testing of genetic and autoimmune clotting disorders. In addition, a hematologist can manage INR and medication such as warfarin as well as any underlying diseases of the blood.
  • Personal story: I was referred to a hematologist in the hospital and he has been my primary point of care for my DVT/PE recovery and management of antiphospholipid syndrome (APS), an autoimmune clotting condition, since then. 
  • More: For more information visit the American Society of Hematology. 

Coumadin (or Anticoagulation) Clinic

  • Role: The Anticoagulation Clinic is a service established to monitor and manage the medication(s) that you take to prevent blood clots (i.e. coumadin/warfarin). Physically, it is a specified location within a hospital or a medical office that is staffed mostly by pharmacists. The pharmacists, working in conjunction with your physician, will check your INR and adjust your dose of warfarin.
  • Benefit: The clinic was set up to be easily accessed to get your INR drawn and know your results immediately. It can eliminate having to make an appointment to see your doctor every time you have an INR check. It is more like a “quick-service” treatment than a full-fledged doctor appointment and should be used in-between doctor (and not as a substitute for) doctor visits.
  • Personal story: There is a Coumadin Clinic where I live, and I was given the option to have my warfarin monitored there, however, I chose not to. I achieve the same results by visiting the hospital walk-in lab and then directly communicating my results (within an hour or so) to my hematologist who then follows up with me.
  • More: Ask your hematologist or PCP if there is a Coumadin Clinic near you and if it would be beneficial to your care.

Pulmonologist

  • Role: A pulmonologist, or pulmonary disease specialist, is a physician who possesses specialized knowledge and skill in the diagnosis and treatment of pulmonary (lung) conditions and diseases. Pulmonology is a subspecialty of Internal Medicine.
  • Benefit: A pulmonologist generally manages complex pulmonary problems stemming from emphysema, tuberculosis, asthma, complicated infections of the chest, the pulmonary complications of AIDS, injury, and complications of respiratory diagnostic and therapeutic procedures, which often could include a PE. If you have a PE and any underlying respiratory concerns, a pulmonologist may be a good option for follow-up care.
  • Personal story: I was evaluated by a cardiologist in the hospital, but do not see him for ongoing care at this time.
  • More: For more information about pulmonology, visit the American College of Physicians.

Cardiologist

  • Role: A cardiologist is a doctor with special training and skill in finding, treating and preventing diseases of the heart and blood vessels.
  • Benefit: If you have survived a blood clot, you may also have damage to your heart and vessels/valves in the heart. A cardiologist is the best person to assess and provide ongoing treatment for any damage caused by a PE, including an enlarged heart, high blood pressure, pulmonary hypertension, etc.
  • Personal story: I was evaluated by a cardiologist in the hospital, but do not see him for ongoing care at this time.
  • More: For more information about cardiology, including inspirational patient stories, visit the American College of Cardiology.

Rheumatologist

  • Role: The role of the rheumatologist is to diagnose, treat, and medically manage patients with arthritis and other rheumatic diseases, often including autoimmune diseases. These health problems affect the joints, muscles, bones, and sometimes other internal organs (e.g., kidneys, lungs, blood vessels, brain). Because these diseases are often complex, they benefit from the care of an expert. Only rheumatologists are experts in this field of medicine.
  • Benefit: Many times, blood clot incidents like DVT or PE can be the cause of something autoimmune going on. A rheumatologist specializes in these diseases and their side effects.
  • Personal story: Since I have antiophospholipid syndrome (APS), my hematologist referred me to a rheumatologist to best monitor any ongoing or new symptoms that could be related to lupus. APS, blood clots, pleurisy (inflammation of the lining of the lungs) and low platelets are all things I have or had that could also be indicators of lupus. I see my rheumatologist about every six months or when needed. He communicates directly with my hematologist.
  • More: For more information, including how to find a rheumatologist in your area, visit the American College of Rheumatology.

A person recovering from a blood clot may also see these specialists for follow-up and/or ongoing care:

  • Vascular Surgeon – A vascular surgeon is a specialized surgeon of all parts of the vascular system, arteries, and veins, except that of the heart and brain (i.e. to repair veins, insert a filter or catheter, etc.)
  • Pain Management Specialist – A pain management specialist is a physician with special training in the evaluation, diagnosis, and treatment of all different types of pain, including acute pain, chronic pain, and cancer pain, and sometimes a combination of these for a variety of reasons including, but not limited to, surgery, injury, nerve damage, and metabolic problems such as diabetes (i.e. to manage pain after a DVT/PE or as a result of underlying issues, etc.).
  • Endocrinologist – An endocrinologist diagnoses and treats hormone imbalances and problems by helping to restore the normal balance of hormones in the body, particularly in thyroid disease and diabetes (i.e. many people who have suffered from a blood clot also suffer from some type of hormone imbalance).
  • Neurologist – A neurologist treats disorders that affect the brain, spinal cord, and nerves, such as stroke, multiple sclerosis, headache disorders, infections of the brain and peripheral nervous system, movement disorders, neurodegenerative disorders, seizure disorders, and speech disorders (i.e. to find out what is causing headaches, stroke or cognitive concerns after a blood clotting episode, particularly if a blood clotting disorder/mutation carries a neurological component or symptom).
  • Radiologist/Interventional Radiologist – A radiologist employs the use of imaging to both diagnose and treat the disease that is visualized within the body (i.e. an imaging scan or ultrasound). Interventional radiology is a sub-specialty of radiology that utilizes minimally invasive image-guided procedures to diagnose and treat diseases in nearly every organ system (i.e. as an alternative to having surgery as the first option for a problem).
  • OBGYN – OB is short for obstetrics or for an obstetrician, a physician who delivers babies. GYN is short for gynecology or for a gynecologist, a physician who specializes in treating diseases of the female reproductive organs (i.e. to manage high-risk pregnancies, heavy menstrual flows, blood clots during pregnancy, etc.).

As you can see, ongoing care will vary greatly from individual to individual, depending on the reason for a blood clot, damages caused, individual patient, and underlying or extenuating factors. This list is by no means all-inclusive or exclusive either as there are many different options for treatment and specialists available.

The bottom line? I think it is beneficial to see a team of doctors for the treatment of DVT and PE. In my case, my care started with a PCP and a hematologist and I was referred to additional specialists depending on individual factors, for example, I see an endocrinologist for underlying thyroid disease. You may regularly visit an anticoagulation clinic for medication management. Recovery from a DVT and/or PE definitely requires follow-up care in medication management, short and long-term complications, and monitoring of all organ systems in the body to ensure no additional damage has occurred or is occurring. Sometimes, a DVT or PE might be the result of an underlying condition or illness that may be not be discovered, unfortunately, until after experiencing a blood clot, as in my case. My personal level of care currently includes my PCP, hematologist, endocrinologist, and rheumatologist.

Reader Writes In. What specialist do you see and for what part of your recovery? Do you also need to see or be referred to an additional one? Are you often overwhelmed or concerned about the number of doctors you see/have seen? How do you best manage your ongoing care in terms of specialists?

There is hope for healing and you are not alone,

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May 21, 2014

How to Prepare for Your First Follow-Up Appointment

It can be very overwhelming and scary in the hospital, much less after you are discharged and on your own. After four days in intensive care battling for my life and nearly a week total in the hospital, I was in no frame of mind to ask questions about what happened to me when the time came – much less understand what was needed in terms of follow-up care. I was on some pretty intensive pain relievers and remember everything being very cloudy.  One day, I fell asleep while talking with my father with half a peanut butter and jelly sandwich in my mouth. I couldn’t carry on a conversation or keep my eyes open for more than a few moments at a time. I remember my first follow-up appointment vividly.  My husband went with me and thought of a few questions I did not.  I was overwhelmed, scared and very grateful to have a hematologist who had answers to most of my questions before I even knew to ask them. I know not everyone is that fortunate so I have put together a list of questions to ask your doctor on your first follow-up appointment.

Tips for your first follow-up appointment:
  1. Take someone with you, if you can. It can be hard to remember of retain what is being discussed.
  2. Take a notepad with you for the same reasons. Do not be afraid to write things down!
  3. Carry records with you from other doctors/hospitalizations that you want your current doctor to know about or have copies of.
  4. Take your list of questions printed ahead of time (or print this list out for reference).
  5. Schedule your next visit prior to leaving. Even if you are given the option, don’t wait so you don’t forget.

Once you are ready for your follow-up appointment, here are some questions you may consider asking, especially early-on in your treatment and diagnosis.

Follow-Up Appointment Questions*

How serious is the extent of the damage from my clotting incident (PE/DVT)?
  • Were any of my organs damaged (heart, lung, etc.) and if so, do I need to take any additional steps to treat?
  • What is the extent of the damage to my veins?
  • Do I (or when do I) need to get a follow-up scan to check the status of the (above) issues?
How will my clot affect my home and work life?
  • When can I return to work?
  • Will I need any special accommodations at work like a chair, stool or the ability to move around?
  • When can I return to exercise? How often and how intense?
  • Do I have any lifting restrictions?
  • Do I have any dietary restrictions?
  • Do I have any travel restrictions?
  • Can I get pregnant and/or breastfeed?
  • What types of over-the-counter medications can I take?
  • Do I need to make any lifestyle changes? (i.e. smoking, diet, exercise, etc.)
What caused my clot?
  • Request testing for genetic and autoimmune clotting conditions? (i.e. Factor V, MTHFR, Antiphospholipid Antibody Syndrome, etc.)
  • Based on the cause, what are my chances of a reoccurrence of a clot? What do I need to be aware of if a reoccurrence should occur?
  • Do I need to see a(nother) specialist? (i.e. Hematologist, Rheumatologist, Pulmonologist, Neurologist, etc. [Please note: Based on my personal experience, I recommend seeing a Hematologist, especially if you are facing any genetic or autoimmune clotting conditions]
  • Do  I need to be concerned for any family members, including children, who may be at risk for this condition?
Who is the primary contact for my ongoing care?
  • Do I need regular blood draws (INR checks) and where should I go to get those done?
  • What is the procedure for INR checks? (i.e. Are they scheduled or walk-ins? Do you call for results or does the doctor contact you? Etc.)
What is the short-term and long-term prognosis for my condition/future clotting?
  • What can I expect to feel physically in the next month, three months, six months, etc.?
  • What can I expect to feel emotionally in the next month, three months, six months, etc.?
  • How will I know I am improving? How will I know I am not improving?
  • How long can you expect my leg to recover? My lung to recover?
  • What long-term complications do I need to be aware of?
What is the course of treatment for my diagnosis?
  • Do I need to schedule any follow-up scans or tests at this time?
  • What options do I have for treatment? (i.e. different medications)
What medications will I need to take?
  • Who manages my medication?
  • What are the benefits and risks of taking this medication?
What is your preferred method of contact? (i.e. phone, email, fax, etc.)
What types of incidents/concerns do I need to alert you of? (i.e. If I fall and hit my head; If I cut myself; If I take an over-the-counter medication, etc.)
Can you provide any resources for further reading?

Share your story. Do you have any questions to add? Did you ask your doctor any of these questions? What was the hardest question for you to ask? Did your physician take the time to talk to you about your concerns or did you feel dismissed?

There is hope for healing and you are not alone,

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*Please note, these questions are meant to serve as a guideline based on questions I either asked at my follow-up appointment(s) or wished I had asked. What you ultimately discuss is between you and your medical team.  

 

 

 

 

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