“The Patient’s Playbook” Review

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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.

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) that 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 (specializes 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 who then directly communicates 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 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 for 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 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 mange 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 disease that is visualized within the body (i.e. an imaging scan or ultrasound). Interventional radiology is a sub-specialty of radiology which 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 to 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, damage done, 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 specialist available.

The bottom line? I think it is beneficial to see a team of doctors for 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 an 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 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 amount 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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