October 26, 2017

Sharing My Patient Journey

When I was first asked to share my patient journey at the Diabetes Sisters Weekend for Women in Alexandria, Virginia I thought one thing: Why me? After all, I talk about my personal recovery from blood clots, and I don’t have diabetes. Excited as I was to explore the possibility, I returned the call to decline and said, “I think you have me confused with someone else. I don’t have diabetes.”

“No, we don’t,” was the answer I received, “We want you to speak because you do not have diabetes. We want to share a different perspective on the patient journey.” Excited by the possibility to speak to a different audience than the ones I am used to, I dove into preparing my presentation to talk about my personal journey from being a patient to being a patient advocate. I’ll be the first to admit, attending an event specific to a disease separate from the one I have was intimidating at first.

Before I went, I learned what I could about DiabetesSisters, a nonprofit organization whose mission is to improve the health and quality of life of women with diabetes, and advocate on their behalf. What I soon realized is, this resource – including the support and educational conference I would be attending – is the type of resource that the VTE community doesn’t have right now. We’re getting there, but we still have some progress to make.

Part of the support that DiabetesSisters offers is regular meetings, or in-person opportunities, to share information, experience, and support with people who have been there too. The Weekend for Women even offered support for partners of women with diabetes (Partner’s Perspective Program) and the Diabetes UnConference, which was exclusively to discuss deeply personal and sensitive issues such as the fear of the unknown when managing a lifelong illness. I soon realized how incredibly fortunate the people attending these sessions are to have this measure of support in their lives, and I immediately wanted to be a part of it.

At the conference, I shared my personal thoughts about how to navigate the path from patient to patient advocate through storytelling, and I shared my thoughts about how telling our stories can in fact lead to healing and empowerment. I also took some time to share important facts about blood clots, including risk factors, and signs and symptoms. I had several women come up to me after my talk to either share their personal blood clot story, or the story of a family member. I also had a few people tell me they had no idea they could be at risk for a blood clot, and about how they planned to discuss their risk with their doctors upon their return home.

I was invited to sit in on the workshops, in which I observed some thought-provoking discussions about how to support a spouse or loved on who has diabetes, and how to handle our worst fears when facing a chronic or long-term illness, like the fear of being incapacitated and left alone, or even the fear of death. I realized these are all thoughts I have had throughout my recovery from blood clots, and I still have some of them today. The fear of the unknown is a great obstacle for many of us, and it was encouraging to hear other people talking about it, face-to-face.

By now, you might be thinking, “Great, but I’m not diabetic, I have a blood clot, so why are you sharing this information with me? The answer is: Whether you have diabetes, have a blood clot, or have a clotting condition, we all share the same journey as a patient. We all must live day to day with an illness that might never go away. We have the same fears, the same struggles, and the same concerns. A person with diabetes might have to consider what he or she eats, and check his or her blood sugar. I have to consider what I eat and check my INR because I take warfarin. We both have to remember to take pills, go to regular follow-up appointments, be proactive in our health, and sometimes, we even have to miss out on things because our illness might take precedence over what we want to do.

What these people taught me is, no matter what the condition is, we all face the same fears, struggles, setbacks, triumphs and joys as a patient, and as a person. They taught me what I was supposed to be sharing with them: Sometimes it is easy to become fully consumed by our own disease and our own situation, but in fact, there are people all around us who can relate to what we have gone through, or what we are going through. As a blogger, and as a patient advocate for the VTE community, I become very consumed with that, because it is my passion, but it’s important to remember that I truly am not alone, even when I look outside of this community.

Below are some some resources that I want you to have. If you have diabetes, or if you want to begin your journey from patient to patient advocate, explore the links below for some essential tools.

Extra Diabetes Resources for You:

Did you know? Long-term diseases like diabetes are a risk factor for life-threatening blood clots. If you have diabetes, I would love to connect you with some of the resources and bloggers from the DiabetesSisters Weekend for Women.

DiabetesSisters
Blood Sugar Trampoline
Below Seven
Diabetes Mine
Yoga for Diabetes

Patient Advocacy Resources for You:

Did you know? Anyone can become a patient advocate just by sharing their story. Below are some resources to help you get started.

Charting Your Own Patient Journey (my slideshow from the conference)
How to Raise Blood Clot Awareness: Discover Your Personal Plan
Sharing Success as an Online Health Blogger
From Make-A-Wish Employee to Making One of My Own Wishes Come True

There is hope for healing and you are not alone,

 

 

Reader Writes In: Are you dealing with other health conditions besides blood clots? Where are you on your own patient journey? Where would you like your journey to take you?

Are you new here? Welcome to BCRN. Here is my story and more about me.

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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May 4, 2017

Patient Story: When Blood Clots Are Just the Beginning by Shelia

This patient story “When Blood Clots Are Just the Beginning” was written by Shelia Ipock for the Blood Clot Recovery Network Blog.

It was the scariest day of my entire 45 years on this earth. I had been complaining of a pain in my lower right side for about two years and had numerous tests. I got to the point where I figured I would just have to live with the pain. At the end of August 2014, I stretched my legs into a straddle and felt a burning sensation in my left inguinal, or groin, area. Over the next few days, it started hurting and it got very warm to the touch. I had been going to the doctor about the pain in my right side and had recently been told it was psychosomatic, or all in my head. I figured I just pulled something and it would resolve itself. We had some friends that we hadn’t seen in a while and we all went dancing that Saturday night. We did three rounds of a line dance, and when I went to turn into the next round, I started seeing spots and I thought, “uh oh.” Then, I passed out.

I came to and was surrounded by people. An employee at the bar assumed that I was intoxicated. My husband told him that I was drinking water, so there was no way that was possible. I got up from the dance floor and took a few steps, and I couldn’t catch my breath. After that episode, I just wanted to go home, but everyone insisted I go to the hospital.

I went to the emergency room at about one o’clock in the morning on Sunday and waited. They found a space for me and sent me in for an MRI of my head. This was after my husband told them I never hit my head. The doctor said nothing was wrong and sent me home. I still had issues breathing, but I figured that it must not be that bad since I was sent home. My husband instead insisted that I go back to ER. I went again and this time they did an x-ray of my chest and stomach area. The ER doctor disregarded the fact that I couldn’t breathe. He took one look at the x-ray and said I was constipated. He gave me some medicine and had a nurse give me an enema and they left me in a room and forgot about me. I had enough and my husband found someone to discharge me. They even admitted they forgot me and then sent me home.

On Monday, I went in to see my general practitioner. I wasn’t looking all that great. I was having more difficulty breathing and walking. My doctor had blood tests done and I went home. I could barely keep my eyes open. On Tuesday, I went back to my doctor. I was gray and couldn’t walk. I was also barely breathing. From there, I went to the hospital and had to be put in a wheel chair just to get to my doctor. She took one look at me and said she thought she knew what was wrong and had to take one more blood test. She sent me to ER so they could do a CT scan. In the machine, I could hear the techs in the back talking quietly to each other in an urgent manner (I later found out they thought I had died in the machine).

Once I was back in ER, everyone began to rush around me. I was quickly put in a bed, an IV was put in, and I was put on oxygen. Then an ER doctor came in and told me I had a saddle pulmonary embolism. He told me I was lucky to be alive, upon viewing the CT scan he said he had never seen a saddle embolism that large. The scan showed 90% of my left lung was blocked and 50% of my right lung was blocked. They got me as stabilized as they could, and I was sent upstairs to Intensive Care Unit (ICU). One of the few things I remember about that time was apologizing to my mother for being admitted to the hospital on her birthday, which was September 17, 2014. I was in the ICU for a week. A week after that, I was back in the hospital with a pleural effusion. That was more painful than the embolism. I was on oxygen for a month. I had to take Coumadin for six months.

When I finished my six months of Coumadin, I was rushed in to have a colonoscopy.  It was determined I had a baseball size tumor that was staged at 3B cancer (so much for psychosomatic, huh?). I ended up finding out that when a person has cancer their blood hyper-coagulates. I finally found out why I had so many blood clots.

I lost my mom to colon cancer the week I finished chemo. I lost my dad nine days later of a broken heart. I have good days and bad days. It’s been two years since my initial diagnosis of a saddle pulmonary embolism. It’s been almost one year since finishing chemotherapy. I have been through a lot. I still have this fear that I will fall over with another blood clot. I also fear a return of cancer. Life will never be the same for me, but I’m alive, and I’m working on getting to a point where I feel healthy again.

Editor’s Note: Thank you, Shelia, for sharing your story with BCRN. Share your thoughts with Shelia 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.

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February 3, 2017

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?”

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December 15, 2016

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.

Filed Under: Educate, Empower Tagged With: , , , , , , , , 5 Comments
November 21, 2016

Patient Story: What the heck is happening?! by John Walker

walker-john-photo-editedI had just secured my dream job of all time, and finished my first year with glowing praise. Life was awesome for the whole family! Now, with good medical coverage, it was time for checkups and even a look at that hernia. So after a few consults, I went in for a hernia surgery. It went well, and after a few days, the pain and anesthesia began to wear off, so I was beginning to move around. In my left arm, I noticed what looked like a long dark, red rope where my vein should be, and a golf ball size lump in my lower bicep. I thought it was IV complications, and I didn’t think about it much. On a recent physical, I was told I was healthy as a horse. I wasn’t even thinking about my mom’s blood clotting issues.

After a few more days of my arm getting stiffer and more sore, I went in for an ultra sound with orders from my primary care physician (PCP). After the ultra sound, I was admitted to the ER with several DVTs – or blood clots – in my arm.

Next came three days in the hospital with all sorts of tests, blood thinners, visits from a hematologist and other doctors, all with me having a hard time taking a deep breath and feeling miserable, not really comprehending it all. Then came the CAT scan and the hematologist told me I had a clot in my right lung or pulmonary embolism. That word went right through me. I had recently lost a friend to a blood clot and suddenly wondered, was this my time? Alone in that hospital bed all night, I went back and forth on the idea of dying, for both my family and myself.

After three more days, I was sent home with Xarelto and warnings to come right back if there was chest pain, difficulty breathing, nausea, sweats, fever, etc. I was wheeled out to my car with a follow up appointment in a few days to the same hematologist.

Home has been weird. Yesterday I was dizzy and weak, but today I am breathing better. The cramp-like pain in my right side went to my upper right chest, and now is back to my right side again. No chest pain, and breathing better. So now I sit and wonder, what the heck just happened?! What will happen next?

Thanks to Blood Clot Recovery Network and all of your stories, I have an idea of where this is all heading. I have hope. I thank all you for telling your stories and offering so much advice. I feel much less alone with this now and a little less afraid.

Share Your Story SQEditor’s Note: Thank you, John, for sharing your story with BCRN. Connect with John, or share your thoughts, 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.

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November 14, 2016

That one thing about blood clots everyone should know.

one-thing

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,

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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.

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