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!
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,
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.