Why I Use the Sagely Smart Weekly Pill Organizer

Please note, I have been given a Sagely Smart Weekly Pill Organizer by the Sagely company to review. Although this product was a gift, all opinions in this review remain my own, and I was in no way influenced by the company.

For as long as I can remember, I have taken a pill. I was diagnosed with hypothyroid disorder early in my life, and I started taking medication to treat my condition at that time. My parents were really good at teaching me that it was important to take my medication like the doctor instructed, and I carried that knowledge into my adult life. Periodically, I also took other medications, vitamins and supplements, based on various needs or problems as they arose. It was never difficult or problematic to manage two or three medications. I just took my pills out of the container they came in first thing in the morning.

Now, as a patient who must take a blood thinner every day, medication remains important to my daily routine, perhaps now more than ever. When people ask me how I feel about depending on a pill to keep me safe – if not alive – I don’t know how to answer because I have always had to take a pill to stay healthy. What I wasn’t expecting was to take pills multiple times a day and feel like I am years and years older than I am. I wasn’t expecting to get excited by pill containers or medication management systems – maybe because I never thought pills would require managing – yet I do. Currently, I take between six and eight pills total, two times a day.

If you follow me on social media, you may have noticed I often share medication management systems because if you take blood thinners, as with all medications, it’s important to make sure you take them and take them at the right time. I have found that a pill box or container is the easiest way for me to know if I have taken my medication or not. Since I take multiple pills, taking them right our of the prescription bottle is no longer a good solution for me. It makes it hard to remember if and when I took my medication.

I’ve used many different types of pill containers over the last few years and although I have a few I like, lately I have been searching for the perfect one. I need something that has enough space for all of my pills, is easy to use and fits within my budget. I began using the Sagely Smart Weekly Pill Organizer, which is revolutionary in its design and definitely unlike anything I have used before.

Below, I am sharing my thoughts about the Sagely Smart Weekly Pill Organizer. Watch my video to hear what I have to say, or read on for my review.

Sagely Smart Weekly Pill Organizer Review

What I like about this pill container:

  • Each day is a separate box (or Pod) with two distinct compartments.
  • The Sagely system allows you to count out your pills on top of the Pod – so you can see which pills you have already distributed – before pushing them through the lid into the Pod itself (you don’t have to open the Pod at all until you are ready to take them). Watch this video to see how it works.
  • The Pod lids are made of soft, food-grade safe material and are very easy to open if you have pain or swelling in your hands.
  • Each Pod sits on a magnetic base, so if you are traveling, you can grab the days you need and go.
  • The Pods are very deep and can hold multiple pills and capsules.
  • It is a very attractive, contemporary design and is nice to look at.
  • There is an accompanying App to help manage your medication.

What I don’t like about this pill container:

  • The base is long (about 12 inches) and takes up a lot of space on a counter or dresser.
  • The Pods are divided into two compartments which are distinguished by color, but do not have AM or PM printed on them, so I can get easily confused about which is which when I am filling the Pods. This problem is resolved once I make up my mind which color to use for which time of day.
  • The lids close like a Tupperware container, and I find I have to double check to make sure they are closed after I take my pills.
  • This pill container is expensive, but it is worth the cost if you are looking for an extensive or unique medication management, with multiple features.

Average Price: $29.95 – $39.95

Where to purchase: Sagely gifted me this product to share my thoughts with all of you, but you can purchase it on Sagely’s website here, or through my Amazon Influencer Shop.

My bottom line: I am currently using the Sagely to manage my medication, and I really like it. My favorite features are the push-through system for putting pills in the containers, how easy it is to open the containers, and the ability to travel with as many days as I need without the days that I don’t.

Are you purchasing a pill container? Get my buyer’s quick tips:
  1. Pick a pill box that suites your medication schedule. There are a variety of containers, including one day, three day, weekly, AM/PM, and even three or four times a day options.
  2. Pick a pill box that is easy for you to use (e.g. opening, closing, portability, etc.)
  3. Pick a pill box that is within your budget. If cost is prohibitive for you and you need more space, sometimes you can purchase two separate containers (e.g. one for morning and one for evening) that suites your needs.

There is hope for healing and you are not alone,

 

 


Reader Writes In: How do you manage your medication? Do you have a favorite system or pill container? Share your thoughts in the comments.


Do you take warfarin and need to keep track of your INR? Get the OATBook App for iPhone to help make it easier. *Once again available for download*


Do you struggle to remember if you took your pills? Get my tips to help you stop asking, “Did I take my medication?”

Be Prepared for an Unexpected Health Crisis

Four years ago, I didn’t know the pain in my leg and in my chest, along with shortness of breath, were symptoms of life-threatening blood clots. I was incredibly lucky to get help for what I was feeling in time, and perhaps just hours before it was too late. This is especially true when you consider the fact that some people never experience symptoms of blood clots. They just don’t survive a blood clot in their lung, or pulmonary embolism. To say I survived what is an often silent, or invisible, killer is something that I think about quite often. Since my blood clot diagnosis and recovery, I have heard from countless people who have lost a friend of family member to a blood clot because they didn’t know they had one, they had no symptoms or they didn’t get medical care in time. It can feel impossible to be prepared for this type of unexpected health crisis.

To say I survived a silent killer is a large part of why I do the work that I do today. I hope that by sharing my story, I can help educate other people about not only the signs and symptoms of deadly blood clots, but also about their risk for one in the first place. I believe that knowledge is one of our best defenses against blood clots and knowing can help to save lives. Now that I know I am at risk for blood clots – and I know what they feel like – I will never delay seeking treatment for as long as I did. Two days of wondering what was going on nearly cost my life.

Carbon monoxide, also known as CO, is another often-ignored silent killer. It is a colorless, odorless, poisonous gas. Symptoms of carbon monoxide poisoning can include a dull headache, weakness, dizziness, nausea or vomiting, shortness of breath, confusion, blurred vision or loss of consciousness. CO poisoning is especially dangerous if you are sleeping or intoxicated, and is a medical emergency because symptoms can be subtle, but can also be deadly.

Those symptoms bring back some unhappy memories of what I experienced with my pulmonary embolism minus the severe pain. It was my hope to never feel anything that caused me great concern again. Yet, there I was on Saturday night, winding down and watching TV after dinner, when out of nowhere, I got a headache, felt dizzy, and felt nauseated. I shook my head around, trying to clear my eyes. The TV screen was blurry, and I suddenly felt out of place, or unsure of what was going on. Generally, my first thought would be “something is wrong with my INR,” but instead I thought, “It might be carbon monoxide poisoning.” I don’t know why I thought this. All I know is that I Googled the symptoms of CO poisoning (I know, never, ever do that) and the rest is history as we know it: I had carbon monoxide poisoning.

As it turns out, even more people experience CO poisoning that I realized. Per the U.S. Consumer Product Safety Commission Carbon Monoxide Info Center, more than 150 people in the Unites States die every year from accidental non-fire related CO poisoning. The U.S. Centers for Disease Control and Prevention states that an average of 430 people die in the U.S. a year due to CO poisoning and countless more are hospitalized due to symptoms. CO poisoning is often associated with consumer products, such as generators. Other products that can omit deadly CO include faulty, improperly-used or incorrectly-vented fuel-burning appliances such as furnaces, stoves, water heaters and fireplaces.

So, while I’m not exactly sure just how many people do die from carbon monoxide poisoning each year, I was exactly sure that I was going to be one of them. There was nothing that anyone could have said or done to convince me that I was not experiencing the symptoms of carbon monoxide poisoning. While I wasn’t running a generator, and I did not have a faulty or improperly installed stove, refrigerator, water heater, furnace or fireplace, I was certain I had missed something, somewhere, and one of these things was omitting odorless, tasteless, deadly gas directly into my bedroom. I was certain that when I went to sleep on Saturday night, I would not wake up on Sunday morning. The only thing the Internet could not tell me was if I had CO in my house.

When my husband came in from outside, shaking the snow off his boots, and proclaimed, “I feel funny in here, but fine outside,” that sealed my fate.

“I think we’re suffering from carbon monoxide poisoning,” I said. He promptly turned around and started lacing up his boots again.

“What are you doing?” I asked. He responded, “I know where this is going, you don’t have to tell me. We’re going to the store to buy a detector.”

Sure enough, at half past midnight on Sunday morning we were on our way to the closest store to find a carbon monoxide detector, but not just any carbon monoxide detector would do. We visited a total of three stores (thank goodness for 24-hour stores) before we found one that plugs in (and will therefore move when I am worried about another room in the house or work when the power goes out). Over an hour and over $40 later, I was back at home, eagerly reading the instructions to set it up. Much to my complete panic, it beeped wildly as soon as the back-up battery was installed, but soon settled on a “0” CO reading, and my sense of peace was restored. I must have been tired or dehydrated – or maybe I ate too much at dinner, much too late – and that’s why I didn’t feel good.

“So, we’re not dying of CO poisoning,” I said to my husband, thoroughly relieved. He replied, “I never thought we were,” equally relieved to be getting ready for bed. I proceeded to thank him profusely for trekking miles from home with me on a cold Saturday night just so I could have peace of mind. Okay, we didn’t trek – and I drove – but I am still grateful for his support in situations just like this.

I nestled into bed, a smile on my face, when one last thought crossed my mind: You’re crazy. I sat up like a lightning bolt, once again unable to relax. A thousand different thoughts entered my mind after that ranging from, “you don’t have every disease, ever” to “you might, you never know” to “you can’t tell anyone about this” to “that was probably a waste of $40” to “what if that $40 saves your life someday” to “you should probably have a CO detector in every room now” to “when was the last time you checked the smoke alarm.”

I only spoke one of them, “Do you think I’m crazy?” My husband answered from the darkness, “No, at least you know we aren’t dying of CO poisoning.” I waited for the “but,” the “and,” the “next time,” but nothing came.

Then he said, “Do you think you’re crazy?”

I didn’t answer him that night, but I laid awake for a while thinking about it before I came to one conclusion: No, I’m not crazy. But surviving something that can kill you – maybe even silently, with no warning – sure does change your perspective on things. I worry about more health-related things, I wonder if I have a health condition that isn’t easy to detect, I wonder if I am sick with something horrible I don’t know about, and yes, I sometimes think the tiniest inconsistency might mean something horrible is wrong with me. It can be maddening if I let it control me.

What I have also come to realize is that all I can do is be prepared, and if that means spending money to buy a detector so I don’t have to worry about carbon monoxide poisoning, then that is what it means. While having a CO detector might be pointless to someone else, it is invaluable to me to have peace of mind about one health condition I can’t otherwise control. Not unlike blood clots, I know my risk for CO poisoning, I know the signs and symptoms of CO poisoning, and I know how to protect myself and my family from it. This happens to be a health concern that was handled outside of a doctor’s office – my symptoms had subsided by the time we returned from the store – but even if it wasn’t: be prepared.

While the unexpected – and the unknown is scary – I think it is possible to be prepared for an unexpected health crisis. Talk to your doctor about your concerns, get your annual wellness and physical exams and tests, pay attention to what your body might be telling you, and take care of yourself to the best of your ability. If you do get sick or injured, have resources on hand to help you, know where to go to get the information you need. Know how your insurance works, how to get care if you don’t have any insurance, find a primary care physician you can rely on to help you get to the specialists you need to see, as soon as you need to see them. Whether you install a CO detector, quit smoking, start exercising, eat healthier, or wear a helmet riding a bike, be prepared to take care of the one and only you.

There is hope for healing and you are not alone,

 

 

 

 


Reader Writes In: Do you worry about health-related things more since your blood clot? How do you handle your anxiety?


What does recovery from a pulmonary embolism feel like? Get more info to share in this post.


Do you suffer from panic attacks? You’re not alone. Here are my tips for how to handle a panic attack after PE.

That one thing about blood clots everyone should know.

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When I was diagnosed with a blood clot and as I went through recovery, I was surprised how much I – and other people I knew – did not not know about blood clots. There was so much I wanted to share with people as I recovered – blood clots hurt, recovery took a long time and yes, you could have a blood clot if you were young, active and healthy. Sometimes, I wished I could just hand people a piece of paper (or several pieces of paper) that said, “Here, here is what you need to know about what I am going through right now. It’s not fun, it’s not easy, and yes, it takes a very long time. Here’s why.”

Have you ever felt that way too?

A number of weeks ago, I asked you a very important question on social media: What is the one thing about blood clots everyone should know? And you answered. 

If you have been diagnosed with a blood clot, it can be difficult to understand – and explain – what you are going through. Here are some thoughts about blood clots and blood clot recovery that you should know. These thoughts are compiled from people who have suffered from blood clots, or who know someone who has suffered from blood clots, as shared with www.BloodClotRecovery.net across a variety of social media channels.

You can also download and print these thoughts to read when you feel alone or to share with someone you know.

What is the one thing about blood clots everyone should know?

Blood clots cause pain.

It doesn’t always mean you’re going to die. I spent three days in the hospital scared I was going to die because I’d known two people who have died. A nurse and a wonderful doctor finally explained that while it was serious, and could have been fatal, I was going to be okay.

It takes time to heal and recover. Be gentle with yourself and listen to your body. It’s okay to rest – you’re not being lazy.

Blood clots are life changing.

Don’t ignore symptoms. It’s better to be safe and get checked out, then lose your life.

They can reoccur, even with proper medications and monitoring.

Listen to your body.

Anybody can get blood clots!

Don’t ignore blood clots – any one, of any age can get them.

They suck A** – just saying.

Definitely listen to your body, rest, ask a lot of questions, and see a psychologist, if needed. Having PEs as bad as mine were, it messed with me terribly.

You don’t always know you have blood clots….shortness of breath may be the only symptom you have!

Blood clots can cause anxiety, sometimes debilitating anxiety, for years to come. Talk to your doctor about that, and know you’re not alone.

It’s okay to cry.

Blood clots kill people.

You can have almost none of the “classic” symptoms, and still have blood clots, and you don’t always get an answer as to why they happened.

All I had was a pinch in my side. I had no idea that my life had forever changed that day.

Blood clots changed my life.

Not only did blood clots change my life in fear, but they changed how I am towards people. Anger, anxiety, depression – one day you think, “I’m okay,” and the next you’re in a panic. The second time around with PE, both due to giving birth, and I hate that this has happened to me. There needs to be a cure, but it feels like no one is even trying to find a cure. They tell you to pop a pill and send you on your way. Seriously.

Listen to what your body tells you, not what others tell you.

You will never be the person you were before. Be your best advocate. Ask any and all questions. Know that you aren’t alone. Listen to your body. It will get better!

This doesn’t happen to everyone, but it happened to me: A few days before my Pes, I had a strange feeling that I didn’t want to be alone, because for some reason, I thought I was going to die and I was afraid. I’ve read this happens to some people, so don’t ignore it, if you feel this. If you didn’t have it happen to you, I know it sounds crazy, but it’s real. Listen to your body and your mind.

You will have better days and bad days. Be thankful for the better ones.

Blood clots suck the life out of you.

It takes time to heal and post-clot anxiety is common. You don’t just start taking medication and everything is suddenly okay.

You may think you’ve just pulled a muscle.

You may look well on the outside, but there’s a lot going on inside and it changes people.

Blood clots are extremely painful.

The emotional side you have to deal with after is hard. Anger, anxiety, depression, etc. are all normal, but no advice is usually given to help with this, or it is not linked to what you have just been through. You have had a near death experience and it’s exhausting.

Pre-clot people should know that the condition even exist. Post-clot people should know everything about thrombosis, because your doctor might not know. We, the world, need more information put out in the commercial world. Way too little information is available for such a common, often fatal condition.

Thrombosis information should be as common as cancer and heart disease. Until I had my first DVT, I assumed it was no worse than a hiccup. I had heard of people (acquaintances, etc.) getting blood clots, but I never heard of it ever causing anyone any problems, and I never heard of anyone dying from them.

I had a DVT with no redness. I had a PE with no coughing.

I have a DVT and PE and it is not nice to go through for two years.

My DVT was asymptomatic below the knee. I only had one symptom: the sensation of a pebble in the back of my knee. A Doppler scan showed sluggish flow throughout my leg.

Blood clots can turn you into a hypochondriac!!! But it is always better to check.

Post-thrombotic (PTS) is hard to live with, but take I every day as it comes, being thankful I’m still here.

Blood clots can happen any time.

Blood clots left me without my brother and also ended my career!

Blood clots turn your life upside down…. the fear, the pain, the anxiety, the anger…. etc. I think about how close to death I was daily, and hope and pray that it doesn’t come back. I had bilateral PEs in December 2015, but it seems like yesterday. I have had so many trips to the ER and doctors afterwards, just because I am afraid that I have another. I am financially and emotionally drained.

Blood clots don’t discriminate! It’s not just surgery that causes clots. It’s not only immobility that contributes to the formation of clots. It doesn’t only happen in the elderly. Not all clots are in legs. People keep asking me, “Clots? Isn’t that what old people get after surgery while sitting around recovering?”

I’ve had two PEs. One with calf and chest pain. The second with no pain at all, just shortness of breath.

Just go to the ER, even if you think it is not a clot. Let go of the fear of going in for nothing.

When a group of doctors sit you in a room and tell you your diagnosis and anticoagulant therapy is your one and only option because the clots in the brain cannot be accessed surgically due to the high risk….You look at their discouraging eyes and realize all you can do is hope and fight. At any moment, you realize you can take your last breath, and all you have is this exact moment to live and breathe.

I’ve not had the easiest life. This though, was the experience that taught me about love, friendship, family, life, and that I was stronger than I ever thought.

It can happen to anyone, and you need to be strong throughout the whole recovery. Otherwise, you will feel lost and not have the courage to keep fighting through it all.

Even though the previous episode wasn’t that long for me, it still lingers in the back of my mind, when and how the next episode will be. Just one step, one day at a time. My main concern is the cost involved. If cost wasn’t a concern, I think that it would minimize a portion of our anxiety and just really concentrate on what is at hand.

Many people still do not know what they are or what the symptoms are – if you feel you may have them get to an ER as soon as possible! When you are unconscious you cannot describe your symptoms! Also, this is one of the most misunderstood medical problems.

How looooooooooooong recovery is… and sometimes you’re never the same.

Blood clots fundamentally change your outlook on life, which is not necessarily a bad thing.

My daughter has a better attitude towards life…for the most part.

It could happen to anyone, at any time!

They happen, but you can recover better than before.

It takes time to heal, even after the clot is gone.

Surviving one can cause a lot of anxiety, fear, and even panic. Don’t be afraid to seek psychiatric help or get counseling, and find someone that specializes in PTSD.

Anyone who has a blood, please join this group, Blood Clot Recovery Network.

There often aren’t answers.

Don’t be a hero, ask for help.

You don’t realize how close to death you are, but you can get better.

It can happen to you, and the only symptom may be a mild cramp-like feel, not a swollen, red, warm calf. Trust your instincts, and don’t be afraid to get checked out.

I never knew that pregnancy was such a high risk for blood clots. I think women should know that

I had six clots within 30 days of birth. I had no idea pregnancy was a bloody nightmare for sticky blood!

You can get swelling even after blood clots have gone.

Many any health care professionals aren’t well informed about blood clots. Blood Clot Recovery Network has been so helpful for me in learning others are going through similar struggles. You aren’t alone!

It can happen to anyone, at any time

Listen to your body!

I’m exhausted. Yes, even just getting dressed is too much, sometimes.

Age does not matter!

They could be deadly, if not treated

It can happen to anyone! You don’t have to be older or sick, it can literally happen to anyone, at any time, no one is excluded.

Anyone can get them!

You can survive.

Drink a lot of water, keep moving.

The symptoms and recovery differ for everyone.

Blood clots happen way more often than people think

There is no backsies when it comes to blood clots. Once you have one, the damage is done. Many survivors live with impairments from their clotting events.

Chronic pain in the leg after a clot can be devastating for so many. Things like sitting at a desk or flying are never the same.

There will be good and bad days.

Blood clots are life changing.

Don’t ignore the symptoms! Go to the ER and speak until someone listens! You don’t have to die from this.

Blood clots can happen to even the healthiest, most active people, out of nowhere. They need to be taken seriously.

We put on a happy face, even though we live with chronic pain.

It will be painful…you will be tired, a tired like nothing you felt before. People won’t understand, ignore them, and listen to your body.

You are your own best advocate. Research, ask questions, and get multiple opinions before settling on what just one doctor tells you.

It doesn’t matter how old you are; you can still get blood clots!

Recovery sucks!

In many cases, blood clots can be a sneaky killer. Mine was disguised as pleurisy, which could have cost my life. I didn’t go to my doctor until it was almost too late. I had no clue it was a life threatening blood clot.

Blood clots can be deadly.

When the doctor tells you it’s a bug bite and take some antibiotics, get a second opinion!

Blood clots can kill you.

Blood clots can happen to active teenagers!

Listen to yourself. If you know something is wrong, speak up, and don’t let your doctor’s just brush it off as nothing. Or in my case, the many times I brought up the different coloring and pain, doctors just said it was healing from my Achilles tendon surgery.

It can take much, much longer than you think to recover.

Blood clots can kill you, and recovery can leave you with lots of health issues.

Blood clots hurt.

Blood clots are life changing. It was the scariest time of my life, and continues to make me worried sick that it could all happen again! Also, the chronic, debilitating pain…..18 months for me, and I’m in chronic pain most days.

Blood clots aren’t always painful. I had one that felt like a small bruise, and it was dismissed, as I wasn’t screaming. To be fair, all my other blood clots were so horrifically painful, I thought I was going to pass out, and they were still missed.

Blood clots for me changed my whole life. They made me realize life’s too short. I think all your comments taught me that I’m not alone. Recovery is long. I am on medication for rest of life, and my health issues are endless, but I’m alive. Some people aren’t so lucky.

The fear never leaves you.

When discovered, you need to advocate for yourself and find the right doctors who will listen.

Blood clots can happen to anyone!!!!!

Listen to your body. If you think there might be something wrong, stop worrying that they will think you are crazy and spend the money, and go to the doctor. I had a small pinch in my chest, that was it. That small pinch saved my life, because I knew it wasn’t right.

Blood clots can happen to anyone

Blood clots are a silent killer.

I was told that a lot of doctors missed my diagnosis – a blood clot in the brain, and inflammation in my brain and spine. They asked what led me to go in, and I just knew that I needed to go in and that something wasn’t right. I am blessed to be alive. It has changed my outlook on a lot of things in life.

I thought I was starting to have panic attacks because of the palpitations and shortness of breath. I drove to my doctor’s surgery, only to be asked, “How long have your lips been blue?” I was taken to the hospital and resuscitated twice. After 14 months, I still get the odd twinge, but I’m on thinners for life.

The recovery process is very slow, and extremely difficult, and a huge emotional roller coaster, which includes a great amount of fear. Doctors talk about the physical aspects, but the emotional side is incredibly hard. Blood clots alter your entire life, and you are not alone. If you have survived, you won.

It doesn’t always take a warm leg for a blood clot to be there. If it’s very swollen, flush red when you stand, and very sensitive to heat, cold, and water, please have it checked out. Just because my calf wasn’t warm, even with a positive D-dimer, three doctors ruled a clot, because it wasn’t warm. Yet, three DVTs were later found in the same leg. Trust your instincts. I said outright it was a blood clot, and the doctors didn’t believe me. If someone says no, it’s not a blood clot, get a second opinion to be sure. If I did, it wouldn’t have broken off and went into both of my lungs. You know your body best.

Always get a second opinion, and if there is one, there could always be another one. The first time I had two blood clots in my brain, with more tests, they found a massive clot in my lung that could have killed me. This time, they found one in my aorta, and the doctor didn’t seem worried. They gave me a very low dose of blood thinner, I saw a new doctor who ran tests, and they found that I had two more blood clots in my brain. Ask a lot of questions, and if they don’t want to answer, find a new doctor!

Being a survivor of PE made me a better person.

Blood clots kill!

Homan’s Sign is discomfort behind the knee on forced dorsiflexion of the foot, and a sign of thrombosis in the lower limb. Everyone’s symptoms are different. This is how I knew that I had a potential problem.

I was diagnosed with a PE in June with no symptoms. I tested positive for factor V Leiden, a genetic blood disorder. If you have been diagnosed with a blood clot, get tested for blood disorders!

Blood clots are life changing, and not in a good way either! Be proactive in your care. Post-thrombotic syndrome is no fun.

If you have pain or difficulty breathing and shortness of breath, get light headed and dizzy, you could have pulmonary embolisms. I had them in the base of both lungs, and DVTs from my hips to my knees in both legs. I also have factor V Leiden. I recommend that anyone who has blood clots, get checked for blood disorders, deficiencies, and if you have any symptoms of blood clots, go to the ER right away.

If you are going through recovery, hang in there. I’m a survivor, and it’s going to get better with positive energies and a positive outlook, babe.

As some have said the emotional mental roller coaster after surviving may be one of the hardest things you’ll ever deal with. Also, if you’re planning to go on oral birth control, request to get tested for any blood disorders beforehand.

The recovery process is slow, long, and scary. And sometimes we suffer from PTSD after. I didn’t realize that I did until a doctor told me that!

Blood clots happen to young, healthy people for what seems like no reason at all (Look at people like Serena Williams, Nick Cannon, and Chris Bosch). They can happen to anyone, at any time.

There is hope for healing and you are not alone,

0-BLOG SIGNATURE SARA

 

 


Reader Writs In: What is the one thing about blood clots everyone should know? Share in the comments.


What does recovery from a pulmonary embolism look like? Get more info to share in this post.


Heading to your first follow-up appointment? Take these questions to your doctor’s appointment.

“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.


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Patient Story: I Never Thought it Would Happen to Me by Victoria

Tovell, Victoria_Circle PicIt’s true, I had heard of pulmonary embolisms. I’m a pharmacist after all. The main thing I associated with having blood clots in your lung was that there was a very good chance you could die. When I chose to have elective knee surgery – a simple day procedure – little did I know six days later a doctor would tell me I had bilateral multiple pulmonary embolisms. I cried, of course. Although I was relieved, they finally knew why my heart rate was so fast, and why I could hardly sit up in bed without breathlessness.

The day after my knee operation, I was puttering around on my crutches, chatting to my best friend on the phone. Suddenly, I couldn’t get my breath. I could hardly speak. I got off the phone and I sat down. My heart was going so fast it was unbelievable. I felt faint, I felt very breathless, and I knew something was very, very wrong. I also started shaking and was drenched in sweat.

I was rushed to hospital and taken straight to resuscitation – not a good sign, I thought – and my heart rate was 180, so they tried to reset it with medication. I gripped my husband’s hand for dear life and repeatedly said “I love you and the children,” and I thought that was it. I thought I was going to die, but I am only 35 years old. I was frankly hoping for a bit longer. Thank goodness my husband is such a great dad. The kids would be okay. “We’ve been so happy. I’ve been lucky,” I thought as I waited to see if I would die. I will never forget that feeling. It pushes its way into the corner of my mind when I go to sleep at night.

Victoria QuoteI was actually sent home the next day as a dubiously unclear CT scan showed nothing. “It’s just a virus,” the doctor said as I struggled to walk two steps without breathlessness. Two days later, I deteriorated and my general practitioner sent me back to the hospital insisting they investigate again. A VQ scan showed multiple clots in both of my lungs. By this time, I could barely sit up in bed. It was the scariest experience I’ve ever had, without a doubt.

Eleven weeks have gone by, and I’m home now. I went back to work for the first time this week. I’m doing school runs and looking after my three children. I’m about 80 percent back to normal. I can function fairly well, but on a bad day, going up and down the stairs is still hard, and I experience gasping for breath a lot, especially when I’m tired. I’m getting there, slowly but surely. I still wonder if I’ll ever feel completely normal again, but I live in hope.

I’m just so happy to be a survivor. I’m so happy to still be a mummy to my children and a wife to my husband. I never imagined how up and down recovery could be, and I was amazed how little information on recovery I was given with no rehabilitation program at all. I would love to be an advocate to promote PE recovery, advice and support in the future. Mainly, I’m just happy I have a future!


Share Your Story SQEditor’s Note: Thank you, Victoria, for sharing your story with BCRN. Connect with Victoria in the comments below.


Read more Patient Stories from BCRN.


Visit How to Share Your Story to share your story with Blood Clot Recovery Network.

Blood Clot Recurrence: Fear No More

Blood clot recurrence is something that happens. It is true that blood clots can happen more than once to the same person. The fear of blood clot recurrence is not at all uncommon if you have experienced a blood clot. You are not alone in wondering if – or even when – a blood clot will happen to you again. While some people only experience one clotting incident, myself included, some people experience many clotting incidents or even continual clotting, which is frightening to think about. Whether you have had one clot or nine clots, the fear of blood clot recurrence is valid because blood clots are dangerous and they can even be deadly. Blood clots cause physical trauma, pain and discomfort as well as emotional and psychological stress, depression and anxiety. Wondering if a second, third, fourth or tenth blood clot will happen to you, only increases the sometimes already-present emotional discomfort of surviving something that one in three people sadly do not.

Fear of Blood Clot Recurrence

In the initial days, weeks and months after my diagnosis, I worried about a second blood clot all the time. I was fearful that every twinge, pain or unusual feeling was another clot moving through my body (presumably on its way to my heart or lungs) – and I was certain that clot would be the one to claim my life. The fear consumed me and at times I could barely eat or sleep. I felt alone in my fear and I wondered if I was overreacting, further emphasizing the thought that I should keep my fear to myself. No one understood, I was certain. So, not long after my initial diagnosis, I found myself trapped in a vicious cycle of worry and and fear of a blood clot recurrence.

For days, weeks, months and even years I worried, the everlasting fear of a recurrent blood clot was at the forefront of nearly all of my thoughts. It hurt, it took its toll on my physical and emotional health – I was tired and anxious – and I feared there was no way out.

Then one day, about four years into my recovery, I realized I wasn’t afraid of getting another blood clot anymore. It was a miracle, it had to be. That was the only explanation as to why a fear I had held on to for so long was seemingly suddenly gone – without any extra encouragement on my part. Of course I prayed, pleaded, cried and wished for the fear to go away, but it hadn’t for so long, so why now?

It was then that I realized, I had also come to understand a lot about blood clots – and even more importantly, a lot about myself – in those same four years. What scared me the most about my blood clot was that I had no idea it was happening: I didn’t know my risk, I didn’t know the symptoms and I didn’t know how I could have prevented any of it. From there, I was able to determine that – armed with knowledge and the passage of time – I had some very valuable tools to help me face, minimize and nearly eliminate my fear of blood clot recurrence.

How to Minimize the Fear of Blood Clot Recurrence

blood clot recurrence tips

Know Your Risk for Blood Clots

One of the most important things you can do to help prevent blood clots is to know your risk for blood clots. I had no idea I was at risk for a blood clot taking birth control pills with estrogen until a blood clot happened to me. Learn about your risks now.

You are at increased risk for blood clots if you or a close family member have had a blood clot before; you have had recent major surgery; you have an inherited clotting condition; have cancer; are immobile for a long time (confined to bed, long-duration plane or car trip, etc.); are pregnant or have recently given birth; or use estrogen-based birth control pills or estrogen for the treatment of menopause symptoms.

You could also be at risk be at risk for a blood clot if you: have a hospital stay, major surgery such as abdominal or pelvic surgery, knee or hip replacement; have major trauma such as an auto accident or fall; live in a nursing home, are immobile, have leg paralysis, are on bed rest for three or more days or are over 65 years old; are on a trip for over four hours by plane, car, train or bus; have active cancer or chemotherapy treatment; have a bone fracture or cast; are taking estrogen-based birth control pills, patch or ring; are taking estrogen for the treatment of menopause symptoms; are pregnant or have recently gave birth; have had a prior blood clot or family history of blood clots; have heart failure; are extremely overweight; or have a genetic/hereditary or acquired blood clotting disorder.

Once you know your risk for blood clots, you can work with your doctors to determine what steps you need to take to help prevent blood clots. For example: I am at risk because I have had a DVT and PE and I have antiphospholipid antibody syndrome, an autoimmune clotting condition. For these risk factors, I take a long-term anticoagulant as part of my treatment plan. I am also at further risk if I sit for long periods or become inactive. For these additional risk factors, I make sure I move around during the day, take extra precautions on long trips and do my best to eat well and exercise.

It is important to note that in 30 percent of patients there is no known cause for blood clots, also called idiopathic. While this is scary in terms of understanding your risk, there are still important things you can do to help ease your fear of blood clot recurrence: recognize signs and symptoms of blood clots and take steps to help prevent blood clots.

Know the Signs and Symptoms of Blood Clots

One of the scariest parts about my blood clot experience is that I had no idea what to watch out for in terms of signs and symptoms of blood clots – so I did not know I had any until it was almost too late. Had I known that I was at risk taking birth control pills with estrogen and that severe pain in my leg and difficulty breathing when laying down were symptoms of a DVT and PE, maybe I would not have waited so long to get help.

A blood clot in your leg or even arm may lead to swelling of your leg or arm, pain or tenderness not caused by an injury or that does not subside, skin that is warm to the touch or skin that is red or discolored. Call your doctor if you have any of these symptoms.

A blood clot in your lung can be life-threatening and may result in difficulty breathing, especially when lying down, chest pain that worsens with a deep breath, coughing or coughing up blood or a fast or irregular heartbeat. Call 911 or go to the nearest emergency room if you have any of these symptoms.

Take Steps to Help Prevent Blood Clots

The good news is, there are many things you can do to help prevent blood clots. Besides knowing your risk and recognizing the signs and symptoms of blood clots you can take some fairly simple steps to help prevent blood clots.

Talk your doctors if you have any risk factors for blood clots, including a family history of blood clots and together, devise a treatment plan. You can also talk to your relatives about your family’s history of blood clots. Before any surgery or procedures, talk with your doctors about blood clots to take preventative measures. If you are confined to a bed either in a hospital or at home due to surgery, illness or paralysis, talk to your doctor about ways to prevent blood clots. If you have been sitting for long periods or are traveling long distances, get up and move. Take steps to maintain a healthy weight, don’t smoke or quit smoking.

Do I still worry about a blood clot happening to me again? Sure, I do. I think that is a very natural part of surviving something that other people do not. I worry from time to time. However, what I can also tell you is that my fear of blood clot recurrence no longer consumes my thoughts and my time. If I think about it at all, it is a passing though, most usually connected to a specific memory about my blood clot or recovery.

There is hope for healing and you are not alone,

 

Sara


Reader Writes In: Are you worried about another blood clot? How do you handle your fear? What tips for facing the fear of blood clot recurrence can you share with others? Share in the comments.


What does it feel like to recover from a blood clot coverTo learn more about what it feels like to recover from a blood clot, visit here.


Are you suffering from depression after a blood clot? You’re not alone. For some tips to deal with depression after a blood clot, visit here.


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