I’m Todd Robertson and I almost died from a blood clot six different times. I was diagnosed with PTSD in 2017 but manage it well today. I have a clotting condition called Factor V Leiden. I lost my wife to brain cancer several years ago and I now ...

Is there something people can do as part of their everyday routine to minimize their chances of developing blood clots?

First of all, thank you for that very important question. This is based on my experience and my own protocol after a conversation with my doctor.

Definitely keep blood flow stimulated, which means don't live a sedentary lifestyle.

Make sure to get up and stretch often, especially when you're traveling. Think when you're driving to work, long distance, air travel. Make sure to not sit in one position for long periods of time.

I like to get up about every 90 minutes and one of my favorite exercises that I can do seated are called ankle clocks. I turn my ankles in circles forward and backward. I also write the alphabet forward and backward with my big toe--it's a big time blood stimulator.

Nearly 80% of the American population is said to be chronically dehydrated. Staying hydrated is so important.

Does death frighten you any less having gone through all this?

That's a great question. Thank you for asking. Does it frighten me less? Yes it does frighten me less. That is solely based on what I have been through in my life. I learned how short life really is when my single parent mom dropped dead right in front of me when I was only 20 years old from a sudden death pulmonary embolism (PE). I was immediately on my own. My wife also died of brain cancer in 2013. With the help of grief counseling and post-clot PTSD counseling - as well as my faith - I learned that truly you have to live every day like it's your last.

We are all going to die, and while we can extend our lives by following certain protocol - whether it's blood clot prevention, early cancer screening etc. There's no point in my dwelling on it and being consumed by anxiety every day. A day wasted is a day you will never get back. Once I put all of those together, I sort of lost my fear of dying. That has helped me emotionally big time. As far as that's related to blood clots, I honestly don't think I'll ever suffer an abnormal blood clot again because I'm aware, I'm educated, I live preventive, and that's how I choose to live my life.

I have good insurance and I've been lucky to have the same doctors for a while, and I know this is not always the case. I recommend people always advocating for themselves.

Hi Todd! What is one thing you wish more people understood about blood clots?

That any one can get a blood clot and that they do not discriminate. Blood clots can be fatal - instantly, in some cases. But we can reduce the risk by following self-protocol like reducing or eliminating risk factors, being aware of symptoms, understanding your family history, etc. Know that blood clot trauma can cause emotional pitfalls like anxiety and post-clot PTSD. If people were more aware of the emotional impact, they would be more prepared for it and be able to seek support.

Two statistics that really stand out to me are following. Venous thromboembolism (VTE) is a collective term which includes a DVT (deep vein thrombosis) that leads to a PE (pulmonary embolism).

Half of VTE patients experience ongoing psychological distress related to their blood clotting event.

1 in 5 VTE patients will experience mental health problems requiring an antidepressant, anti-anxiety medication, or counseling within the first five years after diagnosis.

These are studies from the National Blood Clot Alliance (NBCA). Self-care is so important. People need to know to not be afraid to ask their doctor for a counselor referral.

How did you know you were suffering from a blood clot?

I've had six blood clots, and some have been very different. My first deep vein thrombosis (DVT) I realized that something was wrong when I looked down at my foot and it was purple. I knew that purple was bad because when my wife was dying from brain cancer, parts of her body were turning blue. I knew this wasn't good and I immediately took myself to the emergency room. The next three DVTs were all classic "charley horse" symptoms which felt like a muscle cramp. My leg was swollen and they made me limp, but I knew the symptoms and I took myself into the doctor within 24 hours each time. I knew I needed to immediately been seen. The blood clot in my groin that has been there for 10 years and dissolves gradually, I don't think I've ever felt it. I didn't know it was there until they did an ultrasound for a DVT and they happened to see it.

When I had my pulmonary embolism (PE), the only symptom I had was like someone was sticking me below the right rib cage with a butcher knife. Extreme pain. I had no shortness of breath, coughing, or rapid heart rate. No other common symptoms, but it was only the pain. Since it was below my rib cage, I thought I had pulled a muscle, but when it felt worse I eventually went in to the doctor.

Here is more on signs and symptoms: https://www.worldthrombosisday.org/issue/vte/

What are your thoughts of death by chronic condition versus a quick one out of nowhere?

I ask this because my father was in his late 60's a died of falling off a ladder. He was getting to the age where certain medical issues were starting to creep in so I had wrapped my head around him dying of a heart attack or cancer but the suddenness of dying like that was almost like pulling the most painful band aid off ever. I tried to convince myself that maybe it was better that way that a long drawn out painful run of cancer which my grandparents had all passed away from.

That's a really good question, but that invokes a very long conversation rather than a simple answer. I have had experience with both. My mom was dead immediately from a blood clot, whereas it took my wife five months to die from brain cancer. Death is not easy either way, but it would depend also for myself if I was suffering a lot. I would rather have a quick exit than suffer. During those five months with my wife, that brain cancer really did a number on her and it was a really hard thing to watch. It really depends on the diagnosis, I think. That's a hard one.

Do you travel and if so, how do you handle the risk? I have had two DVTs and while they can't find an identified disorder, they believe I have one (?). Traveling and being ill and in bed are one of the scariest things for me for fear of having another.

Thank you for the question. I do travel a lot for my job and it is true that traveling and not getting the proper blood flow is a top risk factor for blood clot formation, but there is protocol to follow. This is not medical advice, but what I personally do as a clot survivor.

When I drive long distances or fly on an airplane, if you're traveling more than 3-4 hours, I make sure to get up and stop and move at least once during that time period. I personally follow a protocol of every 90 minutes I get up and move. Absolutely make sure to stay hydrated and drink water. Sip the water consistently rather than chugging it all at once. If you're staying properly hydrated, you're going to have to stop, get up, and go to the bathroom, which is movement. Try to move often. I always recommend if you're traveling and you're on anticoagulants, make sure to wear a medical alert ID bracelet. You're away from home and if medics are needed, they need easy access to your medical information. It's very helpful to have the information right there on your ID bracelet.

If you are the passenger in a car, putting your feet up on the dash to stretch is not a good idea in my opinion. I used to be a volunteer fireman and I was called out to many scenes that had many injuries from that.

Don't be afraid to travel and live your life and do some of your favorite activities. Talk to your doctor about your specific situation and your personalized medical history. But know that you don't have to stop living.

Hey Todd. In July I had a serious health scare myself and was diagnosed with MS.

I've found that despite recovering quite well from my relapse, I'm still in that headspace that I was in while I was in hospital (before they realised what was wrong with me I was told that the illness be fatal, so as you can imagine I had a shit few days).

I find myself constantly re-experiencing that same existential terror I had while in hospital, despite now knowing that my condition isn't imminently fatal.

Did you experience anything like this and how did you 'get over' the horrible anxiety?

Thanks!

Thank you for your question, Bonnie. The anxiety is definitely a big part of blood clot trauma and all medical trauma, including yours. Even I still to this day, for the first few days after a diagnosis of something (for example, last year they found a mass on my liver) I was just like anybody else. I immediately went to the bad stuff and asking myself scary questions.

Even I had anxiety in the first day or two, and then I just had a peace over me because I have had to learn how to deal with health anxiety by not worrying about something that just may not be. Usually the stuff we worry about end up not really happening at all.

We waste a lot of time on that anxiety, but I just gather my thoughts, senses, and do research. A lot of people say don't Google things, but if you can get your anxiety under control, doing research and having knowledge can help you and be powerful. I always talk to my doctor and then my anxiety levels drop. I just accept whatever is going to happen as it's going to happen, and a peace falls on me. Going back to my liver tumor, I went into a long surgery with a positive vibe. I was going to accept whatever the outcome was going to be. The next thing I know, I'm waking up from anesthesia and the doctor said it didn't look like a cancerous tumor. I didn't let it consume or control me. By the grace of God, it was just a benign mass on my liver that needed to come off. I recovered nicely and here I am today.

Anxiety is going to affect us all, but there are management tools that we can use to lower that anxiety. Consider therapy, deep breathing, nature bathing. Nature bathing is going and sitting outside with no phone and just listening to the sounds.

I highly recommend counseling, especially for blood clots. Not enough people do it. I think doctors should make it mandatory to mention post-clot PTSD.

My question from the original post:

Thank you for doing this AMA.

Given your past, how do you remain positive during hard times?

Thank you for your question. As far as how I handle hard times, let's just say I handle them differently than before I had all my counseling and before my wife died. I learned a lot from that loss. Now, I never throw religion into anybody's face, but I am a man of faith and I rely on my faith a lot. I find it mentally healthy to think in a positive light.

If you think negative and you are consumed with anxiety, worry, and negative thoughts, it can take over your life. It can affect your physical health, not just your mental health. I have just made a decision to find a positive spin on everything that happens.

It is my firm belief that if you look hard enough, you will find blessings in every single thing that happens to you. Your eyes have to be open and you have to be able to see it. That said, it's not an easy thing. It took me 50 years to get to this point. I feel like I wasted so many years of my life because I was a negative thinker.

I'm enjoying every day more than I've ever had despite my own medical conditions, tragedy and trauma. It's working for me....through that, I seem to have less problems. There's not a connection that I can prove, but I know that when I acknowledge my blessings, I receive more.

Todd, you’ve been the patient many times but it sounds like you were also the caregiver for your wife. What advice do you have for caregivers of someone with a chronic condition? How can we support our loved ones best?

When you are a caregiver and you're having to take care of somebody, you can't forget about yourself. It's really easy to pour everything into the person you're taking car eof and not keep yourself healthy. If that happens, you're doing more harm than good for the person you're taking care of. Have help and take time for yourself. Get plenty of rest so you can stay focused.

Do the best you can. I don't think people realize how hard caregiving is. When it came to my wife, caring for your spouse-your life partner, to keep that positive attitude in front of them and being strong is a really difficult thing to do. Although I've lost a lot of people in my life, that was the first time that I really had to care for somebody. Make sure you get plenty of self-care when you're caring for other people.

If you could go back to the day you received your first diagnosis, is there anything you wish your doctor had done differently in how they presented the information to you?

In my personal situation, I got really lucky and they took a very proactive stance with me and gave me a lot of information. The only thing they didn't mention was the possibility of having anxiety from it. I wish all doctors would mention anxiety as a risk for everyone after a diagnosis. It would lessen anxiety in people just being able to hear it from their doctor.

I recommend being very firm with your primary care doctor and ask for referrals if needed. My game plan is always "ask." If you're not getting the answers you want, go out and get a second opinion.

In my opinion, I think anyone that has suffered a PE should have a hematologist, pulmonologist, and maybe even a cardiologist, and definitely a counselor. For me, that's my medical team on standby for me.

Heterozygous or homozygous?

I am a homozygous Factor V Leiden. I inherited it from both my mother and my father. As a homozygite, I am 80x more likely to suffer a blood clot than others. Of course, the anticoagulant helps with this, but homozygous is very aggressive.

My mother is on eliquis to prevent blood clots related to her atrial fibrillation. I just heard about major changes in insurance coverage for this medication. Can you tell me what’s going on?

Here is a link to the latest update on this news: https://www.stoptheclot.org/news/urgent-patient-advocacy-update-from-the-national-blood-clot-alliance/

Thank you for the question. As some of you may be aware, CVS Health recently decided to remove all but one direct-oral anticoagulant from its commercial pharmacy benefit plan. So for patients who had been on other DOACs, they are now having to choose others to take. Treatment choices should be based upon the clinical evidence, patient evidence, and their risk tolerance to those anticoagulants.

Changing anticoagulant treatment for reasons other than medical necessity can be potentially hazardous to people's health. It does create a burden having to switch - both physically, emotionally, and financially. The National Blood Clot Alliance (NBCA) has been involved in rectifying this situation. I recommend reading the full statement above for more information.

If you have concerns, we always recommend talking to your physician based on your specific situation.

Posting from the old thread

Hi Todd, so you run this support group besides a job or this is what you do full-time?

I'm very new into the job field and still exploring what options are out there which can keep me alive while not having to bend in front of a capitalist company, hence the question

Thank you for the question. My full-time job is outreach coordinator for the rivers program at the Iowa Department of Natural Resources (similar to Dept. of Fish & Game). My main job is river safety education and I'm a canoe and kayak instructor. I have a very active job. I don't have to sit at a desk full-time except for on-and-off during the winter months, but I follow the same protocol of making sure to get up often. I actually use a stand-up desk.

No matter what job you do, you can continue to do it - as far as I'm concerned - after a blood clot, but you have to follow certain protocol with each job. It's important to talk to your doctor about your specific medical history, too, to make sure there are no additional risks.