July 26, 2017

When should I call my doctor?

After my blood clot, I felt like I could no longer trust my body anymore. After all, I was taking care of it – exercising, eating well and losing some extra weight – when a blood clot from my leg went to my lung and almost ended my life at just 29 years old. I was healthier than I had been in a couple of years, I was happy, and I had no other out-of-control health problems. The very last thing I expected was a blood clot, in fact, I didn’t expect one at all. If I couldn’t trust my body when it was healthy, how could I possibly trust it when I was sick, on blood thinners, and recovering from a mind-blowing event that nearly killed me? I couldn’t. That was almost as scary as surviving something that kills one in three people that it affects. Not only could I not trust my body, I also wondered if I could trust my head: How would I know if I should call my doctor during my long and difficult recovery?

In the initial days after my discharge from the hospital, I was at my hematologist’s office once or twice a week to have my INR checked. I had an appointment with my doctor every month to discuss my treatment and my recovery, and I had a lot of appointments with a variety of other specialists to fill the rest of my very miserable time with. I am very fortunate that my hematologist – and my main point of contact for my care – is very understanding and supportive and assured me early on that no question was dumb, no phone call was a waste of anyone’s time, and he absolutely expected to hear from me a lot as I went through the stages of healing. So, I figured, what did I have to lose? I called him a lot – for everything in the beginning. If I had any pain, unusual feeling, or question, I just called him. I treated it as a non-negotiable part of my treatment plan: Take your medication, go to your appointments, and call your doctor.

He always answered me in some way. Sometimes, his answer was, “That’s normal, you can expect that,” or it was “Why don’t you make an appointment to come see me?” or, one time it was, “You need to go to the emergency room right now.” That time I thought I had another PE, and thankfully, I didn’t. I did have pleurisy, or inflammation of the lining of my lung, which was nearly as painful and required admission to be treated.

As time went on, I started to learn how my doctor would answer me, and I started to learn how my body felt after a blood clot. I started to learn what was “normal” for me, what was unusual for me, and what was downright frightening for me, or sent me into panic mode. Eventually, I noticed I was calling my doctor a little less than once or twice a week, as I learned to manage my health with my own knowledge and experiences. I went from calling my doctor a couple of times a week, to calling him a couple of times a year. I now know when I need to seek help right away, make an appointment, or when I can handle a situation at home, by myself.

One of the questions I hear frequently is, “How do I know when I should call my doctor?” The answer is simple: If you have to ask, call your doctor. That being said, calling a doctor is not easy for everyone – and not everyone has a supportive doctor. If that’s how you feel, there are some things you can do to help you decide if you should call your doctor.

Listen to your body.

You may not trust your body – or you might be really angry with it after everything you have been through – but trust me, your body is smart. Listen to it. Your body is very good at letting you know, most of the time, when something is wrong. If you feel pain or have symptoms that are unusual for you, your body might be trying to tell you that something is wrong.

Work with your doctor, or healthcare professional.

Your doctor is your best resource for understanding your symptoms and what they may mean. Your doctor works for you – and you should not worry about bothering him or her. If you don’t have a doctor who you feel is a partner in your care, take steps to find a doctor who is. You, and you alone, are in charge of your body and your recovery. Talk to your doctor about a plan to manage your health. Can you call him or her? Can you send an email? Should you proceed right to the emergency room for certain things? What symptoms should you watch out for? What symptoms might be normal for you? Work with your doctor to develop a plan of action – no matter how simple – for handling your health questions. My plan was as simple as this: Call my hematologist with any questions I have.

Trust your past experiences.

This ties together listening to your body and working with your healthcare provider. Once you do these things, you will start to learn what is and what is not normal for you during your recovery. For example, let’s say you have a pain in your leg that feels exactly like your DVT, so you call your doctor, and he or she advices you to seek medical attention right away. You automatically know what to do if and when it happens again. If you have pain in your leg that hurts a lot, but goes away with rest and elevation – when your DVT pain did not – you start to learn what that pain means for your body. Maybe it means you walked too much, or worked out too hard at the gym. Simple thoughts like, “This pain is different,” or “I have never hurt this bad before,” are clues that something could be very wrong, and you should call your doctor for guidance. Thoughts like, “This feels familiar, I need to take it easy this afternoon,” or “I have felt this tired when I don’t get enough rest at night” might be clues that a particular feeling is normal for you. If you can’t remember, or if it seems overwhelming to understand your experiences, keep a journal or log book with simple entries about what you feel, when you feel it, for how long, and what the resolution is.

Some Important Things to Watch Out For  

There are some signs and symptoms that you should be aware of – especially once you have had a blood clot – and you should always call your doctor if you question how you are feeling.

A blood clot in the leg or arm (or other parts of the body) is called deep vein thrombosis, or DVT, and is dangerous because it can break apart and travel through the blood stream, leading to life-threatening problems, like a blood clot in the lung. If you experience signs or symptoms of a DVT, call your doctor or seek medical attention as soon as possible.

Signs and symptoms of a blood clot in the leg or arm (deep vein thrombosis or DVT):
  • Swelling in the affected leg, including swelling in your ankle and foot, or swelling in your arm
  • Pain in your leg, ankle, foot, or arm. The pain in your leg can feel like severe cramping, or a charley horse, and often won’t go away with your regular methods of pain relief
  • Warmth and/or tenderness over the affected area
  • Changes in your skin’s natural color (red, blue, white, or purple)

A blood clot that breaks off from the leg or arm and travels to through the bloodstream to the lung is called pulmonary embolism, or PE. A PE is life-threatening because it can block blood flow and oxygen to the lung(s). If you experience signs or symptoms of a PE, go to the emergency room, or call 911, immediately.

Signs and symptoms of a blood clot in the lung (pulmonary embolism or PE):
  • Unexplained sudden onset of shortness of breath
  • Chest pain or discomfort that worsens when you take a deep breath, cough, or even lie down
  • Feeling lightheadedness or dizzy
  • Rapid pulse
  • Sweating
  • Coughing, or coughing up blood
  • A sense of anxiety, nervousness or impending doom

If you are taking blood thinners, you might also worry about unwanted or dangerous bleeding. If you have any questions about bleeding, you should call your doctor right away.

Signs and symptoms of dangerous or internal bleeding can vary greatly depending on where in the body bleeding may occur. If you experience these symptoms – or any other symptoms that cause you concern – call 911 or seek medical attention right away.

Signs and symptoms of bleeding
  • Abdominal pain and/or swelling
  • Light-headedness, dizziness, or fainting (can result from any source of internal bleeding once enough blood is lost)
  • A large area of deeply purple skin, or bruising, especially around the chest or abdomen areas
  • Swelling, tightness, and pain in the leg or arm after an injury
  • Headache and/or loss of consciousness
  • Blood in urine or stool (black or tarry stool)
  • Shortness of breath
  • Chest pain
  • Nosebleeds, cuts, scrapes, etc. that do not stop bleeding after applying direct pressure for 10-15 minutes
  • Nausea and/or vomiting
  • Unexplained bleeding from another body cavity, including ears, nose, mouth, or anus
  • More symptoms of internal bleeding
Even though it can be difficult to learn about your body after a blood clot, there are some things that you should never ignore. In the event of a head injury – such as a bump, bruise, cut, etc. – always consult with your doctor as soon as possible for further instruction, or seek immediate medical attention. If you have shortness of breath, chest pain, or the worst headache of your life, always seek immediate medical attention because these might be symptoms of something serious. 

Managing your health after a blood clot is not easy, and there are many things to think about, consider and worry about. In time – as you learn from your experiences and your healthcare provider – it does get easier and eventually, I hope you will find that you know your body very well. While it may take some time to get there, you too can manage your health after a blood clot. In the meantime, if you wonder, always make the call. Your health – and perhaps ultimately your life – are always worth making the call.

There is hope for healing and you are not alone,

Reader Writes In: How do you decide when to call your doctor? Is your doctor a partner in your care? Why or why not? How do you manage your health after a blood clot?

There are three symptoms you should never ignore. Find out what they are.

Are you worried that you might have a blood clot? Here is how to talk to your doctor.

Connect with BCRN on Facebook and in our private Group.

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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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September 10, 2014

A Survivor Speaks: A Remarkable Recovery

I wished to share my PE experience which is now 3 months out. Back in May, I just came back from a successful but exhausting trip in Calgary to my Montreal home. I decided to extend the long weekend by taking Friday off when I woke up with a strange and out of place feeling in my right breast. It felt like a little inner poke or a little lump. It did not feel cardiac, more muscular, but still out of place. I found it strange as I only did cardio workouts for the last few days and did no lift any weights or performed push-ups. Since it was on my rights side, there was no immediate panic and I simply tried to rub it out over and over again. I even called one of my staff and joked about this sudden chest discomfort brushing it off as nothing.

I went downstairs, my wife was on the twins case about homework and getting their project done – being a traveling father and now dealing with this lump, I really did not want to get into it and kept rubbing by chest as the discomfort grew. At this point it was not painful but did not feel natural. We all have aches and pains and in most cases they go away – or so I was hoping.

The uneasiness grew, I did not want to scare my wife and kids and discreetly started to look up heart attack symptoms on my iPad, took 2 baby aspirins -and even some Tums. Even though it was on my right side, it was in my chest area. I had no typical symptoms except for this persistent lump that I kept rubbing. So I figured I had to “walk it off” and went to do errands with my head slightly getting overloaded with anxiety.

I came home and kept holding my chest. It was not really painful, just out of place. I figured I might as well get it checked out as it was not going away. Somehow this hit my little boy and he began to cry and fear for his Dad. I decided to drive myself to the Lakeshore General hospital in the West Island of Montreal.

Now Lakeshore is not the biggest hospital in Montreal and does not have the reputation carried by the Montreal General, Royal Vic or the Montreal Jewish hospital. It’s close by and convenient. I figured and “hoped” that if I did have a cardiac event, they would know what to do and, if need be, stabilize me and ship me out. But a hospital is a hospital and I just lauded spending possibly hours in ER triage and waiting room. I mean I looked really healthy otherwise so who knew what the wait would be, I packed up my iPod , iPad, chargers and portable Wi-Fi. I was set for the next several hours.

As I left home, my wife said, “Tell them you have chest pains and high cholesterol.”  Okay, I guess, anything to get through this faster so I can back home.

“Yes sir,” said the ER nurse. “Hum, I have high cholesterol and chest pains,” I replied

She barraged me with the typical questions and asked me the pain level from 1 to 10. Something I did not expect, at this point there was no DVT pain or anything except for this lump.

“About 3, but if I move this way or breathe hard it can go up to a 6 maybe,” I replied and went to sit down because I was getting light-headed with stress and hunger.

The wait was not that long after all; I guess being middle aged and complaining about chest pains gets some attention. The same questions kept coming back: “Why are you here? Where does it hurt? Do you feel nauseous?” And the dreaded, “What’s your pain level from 1 to 10?”

They gave me an EKG that was rather funky but not definitive. Blood work, several hours apart, was in order to see if the ticker got damaged and the gurney took me from triage to the bowels of the ER. A young Doctor who comes from the same country as my parents and with the seriousness of seeing one too many hypochondriacs asked me again to quantify the level of pain I had, if I had shortness of breath etc… Frankly at this point, I thought I was wasting everyone’s time including my own.

“Look,” I said, ” I’m in solid shape” which I am. “I was in Calgary where I did 3 solid cardio workouts in 3 days, doing 50 minutes on the elliptical followed by climbing 20 flights of stairs – no issues, no pain all good. My last night in Calgary was brutal as the fire alarm went off at 1:30 a.m.,  and I had an early morning meeting before coming back East that day. I was wiped by the time I got home. It’s probably just muscular, plus fatigue etc.”

The young Doctor kept saying, “We will just make sure.”  And for the next few hours, he kept checking up on me, asking if the pain was the same, and it was. The answers never deviated, but I wondered if I just needed to pack it up believing, that I was taking someone else’s bed that needed real attention. He kept coming back and then asked in a Dr House manner, “You said you travel, right?”

“Huh huh” I replied. “Let me check just one more thing.” He then proceeded to have me do a chest x-ray and CT Scan. All I could think was “Wow,this is Canada, not bad.” I was not keen on having this liquid in my veins, for the CT scan, but I’m here, let’s get everything checked. I did not think much about it. The young Doc came back at 11:00 p.m. to interrupt my Candy Crush game. “I’m glad I did the test,” he said, “You have blood clots in your right lung.”

I was to be kept overnight, monitored and told I would have to to take anti-coagulants and blood thinners. In the morning, I would see a hematologist. I asked if I could be out of the hospital by 1:00 p.m. as the puck was dropping at that time for the hockey playoffs. I had priorities obviously.

I was nevertheless stunned. I knew it was serious, but realized only when I started doing internet searches on the severity of the matter. The young doctor’s gut feeling to do this scan probably saved my life and/or avoided further internal trauma and damage to my lungs or worse. Spending a night in the ER is quite something, but the staff made me feel comfortable, even fetching me a sandwich when I was starving late in the evening.

I was quite happy to go home. Say what you want about the Canadian Medicare system, but it works. I had no papers, insurance or others to sign and all that it cost me was $13.50 for parking. I now continue to see a no-nonsense hematologist at the hospital and am proceeding strongly. I have recovered well, and after reading the challenges of so many, I feel fortunate. I was back doing long walks and working out. I did suffer a setback due to a severe summer cold causing extreme fatigue, but finally recovered from that and am back full swing. I continue to take Coumadin and am stable with little bleeding incidents. I will likely do so for a long time, if not life.

My PE was “unprovoked” and since treatments work and don’t affect my day to day life and sport activities, the Hematologist believes I should stay on. Overall, the hospital was great and accessible but I again attribute my recovery to this young ER doctor and his common sense gut feeling. While serious in his duties, I remember seeing him smile when I said, ” You know that Milan Lucic, the hockey player from Boston and nemesis of anything Montreal, he is one of us.”

Since I left, I joined Blood Clot Recovery Network on Facebook or BCRN. Sara, the founder, has been my rock, helping me understand what was happening to me, to my body, and what was I going through in the healing process. For this I’m grateful to Sara and her commitment. My awareness regarding thrombosis is at a heightened level, and I feel lucky to be able to share my story and while fortunate appreciate the struggles that so many who are afflicted by a blood disorder go through.

*Editor’s Note:  Thank you, Yves, for sharing your story with BCRN! Connect with Yves in the comments below or in the BCRN Facebook Discussion Group.

 

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June 11, 2014

Three Symptoms You Should Never Ignore

Deep vein thrombosis (DVT) and pulmonary embolism (PE) are, without doubt, the most painful injuries I have ever experienced in my life. As a prior athlete, I had become accustomed to pain to some extent. After all, training for a half marathons is not meant to be pain-free. My legs hurt, my feet hurt, my shoulders hurt and even my lungs hurt at different points throughout my training. Growing accustomed to ongoing knee pain actually contributed to a delay in my seeking medical treatment for my DVT because I thought it was a result of a recurring overuse injury. I finally went to the Emergency Room (and only after instruction from my family physician) when I was struggling to breathe. Pain, as I have come to find out, is also a part of recovery from a DVT and PE. As we become more accustomed to pain during recovery, there are three symptoms you should never ignore when it comes to your health.

Learning to gauge what pain is critical and what is a normal part of recovery can be difficult and, above all else, it is important to remain in contact with your physician about your specific symptoms. Pain, for me, comes and goes now, two years out from my DVT and PE. Some days I feel great and other days it is still a struggle to get up, get dressed and walk up the stairs because of pain in my leg affected by DVT or pain in my side from the PE. While the pain has lessened over time, I did not know what pain was normal and what wasn’t in the beginning. Two months after I was admitted to the hospital with the PE, I was re-admitted with pain in my same side, this time as a result of pleurisy (or inflammation of the lining of the lung). I called my doctor and he indicated given my very recent history of PE, it was better to get it checked out than to wait. And, when in doubt and regardless of the perceived severity of your symptoms, get checked out, especially these three symptoms!

As time progressed, I learned to gauge pain, but once again found myself in the ER more recently with a severe headache that lasted over a day and caused blurry vision. That was abnormal for me, something new and a growing concern the longer it persisted. Again, my doctor advised that given my history of clotting and increased risk of stroke due to antiphospholipid syndrome, it was best to get it checked out. In this case, it was just a headache (presumably brought on by lack of sleep and stress and maybe a protruding wisdom tooth), but again, I did not know.

Now, after these experiences, I know there are three symptoms you should never ignore – regardless of your past medical history.

1) Difficulty Breathing/Shortness of Breath

Shortness of breath has many different causes. For example, known and chronic heart disease can cause breathlessness if your heart is struggling to pump blood throughout your body.While you can have difficulty breathing with, for example, pneumonia or bronchitis, it can also be a symptom of something life-threatening such as a heart attack or a PE. You should seek immediate medical assistance especially if your symptoms appear suddenly, are long-lasting, are new or do not subside with regular rest.

2) Chest Pains

Causes of chest pain can vary from minor problems, such as indigestion or stress, to serious medical emergencies, such as a heart attack or PE. The specific cause of chest pain is often difficult to diagnose without medical attention. Chest pains that appear suddenly are of significant concern and can be symptoms of a PE, heart attack or even a stroke. Chest pains may present as numbness or tingling in the chest area, back or even the shoulder arm/area. You should seek immediate medical assistance if you experience chest pains that are sudden and unexplained.

3) Headache (sudden onset, long-lasting or especially one that causes changes in vision or speech)

Common types of headaches include tension headaches, migraines, sinus headaches, and headaches that begin in your neck. You can have a headache with a cold or flu or as a result of other illness. They can range from mild to severe in symptoms. Headaches that are particularly concerning are the ones that come on suddenly, last for an extended period of time or cause changes in vision and/or speech as these can be symptoms of a stroke or blood clot. You should seek immediate medical assistance if you experience a headache with any of these symptoms.

The bottom line is, you know your body best and as you are recovering and learning what pain is normal for you, it is important to keep in touch with your medical professional about any sudden or unexplained symptoms you experience. If you cannot get in contact with your doctor or are concerned, chest pains, shortness of breath and headaches are three symptoms you should never ignore when it comes to your health.

Share your story. Do you agree that these are three symptoms you should never ignore? How are you listening to your body?

There is hope for healing and you are not alone,

0-BLOG SIGNATURE SARA

 

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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.  

 

 

 

 

Filed Under: Educate Tagged With: , , , , , , , , , , , , , , , 15 Comments
April 9, 2014

In Defense of the ER

When I woke up with a headache at 4:00 a.m., and I didn’t think anything was wrong, because I didn’t have it earlier in the day. In my head’s defense, I hadn’t been sleeping and had a few long days and nights. In my doctor’s defense, I didn’t know anything was wrong the last time something was seriously wrong so I knew he would send me to the Emergency Room when I called him around 4:00 that same afternoon and told him I had blurred vision too. In my eyes’ defense, I was staring at a computer screen all day. In my doctor’s defense (again) that sort of thing never caused blurred vision before. In my defense, I knew what the outcome would be and the ER is time-consuming, expensive and sometimes inconclusive or seemingly even a waste of time. My doctor, seemingly the only one concerned about me (between him and I) by dinnertime, requested I head (no pun intended) to the ER to get a CAT scan. I did, begrudgingly, and told myself the whole way there I would tell anyone else in my shoes to go.

Hospitals never bothered me [before] so I wasn’t expecting the sheer terror I experienced when the nurse wanted to insert an IV. When asked why she said, “Just in case we have to admit you,” which completely sent me into an unexpected fit of tears. She and her summoned colleague decided against the IV and proceeded to stare at me for several minutes while I wiped the snot off my face and all over my sleeves. I went to sit in the waiting room while they ordered blood work, which – in my head’s defense – made me feel better.

Just about two hours (I consider myself lucky) and who knows how many thousands of dollars later, I had the CAT scan and was waiting on the results. The ER doctor came in and told me what I already suspected, “I don’t see a clot and I don’t see a bleed. I don’t see anything identifiable at the moment, but I am concerned about the headache.” In exasperation, I threw my hands into the air and exclaimed, “I knew I was overreacting!”

The doctor stopped shuffling papers, put down my charts, folded his arms on his lap and leaned forward, looking directly into my eyes. I stared back. I could feel the tears welling up, and I tried to focus on how kind and reassuring his eyes looked to me. He breathed deeply and leaned back again.

“This is your life being on warfarin,” he said, “You never know, you never can tell. You have things going on. You have things working against you and a history that does not put you in a comfortable place medically. It could have been a bleed. It could have been a clot. It could be something neurological. I would rather see you here on an overreaction than the way you were before. Nothing about this will ever be an overreaction. You’re a remarkable young lady. You have to take care of yourself and this is one of the ways you have to do it now.”

I stared at him and blubbered on about my story – my PE and everything I had been through in the last year or so – a job loss, relationship struggles, pain and fear and a loss of self that has still impacted me in a way I don’t recognize today. I don’t think I was uttering a bit of sense, but that doctor listened with all the sincerity and compassion he could. When his pager shrieked and a trauma was called out overhead, I knew he had to go; and he left me on the condition I could go home if I promised to 1) come back if my head was not better or worse in 24 hours, 2) follow-up with my doctor and 3) ask for a referral to a neurologist to hopefully get to the root of the problem. Only four hours after I first arrived, I collected my stuff, swallowed two Tylenol tablets and was discharged per the above contract.

My headache did not grow worse and lessened over the next several hours (with rest and quiet), but I am grateful I went to the ER. I followed up with my hematologist the next morning who confirmed I could never be sure with my clotting history and whether I was willing to or not, he was not willing to take the chance that I might have another clot. I might not get so lucky to survive the next time.

I left that ER feeling completely validated for even calling my doctor in the first place. I left feeling like I did the right thing and, aside from what could be going on with my brain, I actually left feeling like there was nothing wrong with me.

Today, I am passing that message of validation on to you. I know it is hard to go to the ER when you think something could – or could not – be wrong. I know money, time, effort and perceived consequences are the first thing on each of our minds. I know because it just happened to me.

I am here to tell you that if you have anything that causes you concern enough to wonder if something else might be going on, you are right in seeking medical attention. Do not not let anyone tell you or treat you differently. If you are worried due to breathing issues, chest pains/sensations, difficulty speaking or swallowing, loss of balance, headaches, nausea, blurred vision or lack of mobility – that is all the more reason to go. You never know. We just never know.

We become accustomed to feeling like we are overreacting (because sometimes nothing is wrong), like we always have something wrong (because a lot of times it is), like we are always sick or a complainer (it’s easy to let others make us think this way) and given what we have all been through (which is not to be taken lightly), our bodies and minds deserve better than that thinking. You deserve better than that thinking. Please, I urge you and I always will, seek the medical attention you need if you are feeling like something is wrong. If you aren’t an advocate for your health, there just may not be anyone else who is either; and the chance we have been given is just too previous, in my opinion, to let slip away for a second time.

Be well.

Share your story. Have you ever gone to the ER and found nothing was wrong? Something was wrong? Do you feel like you are overreacting to the point of not going to the ER? What has (or has not) changed your mind? Do you go to the ER more since your clot?

There is hope for healing and you are not alone,

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Filed Under: Educate, Empower, Encourage Tagged With: , , , , , , , , , , 25 Comments
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