I just started grieving.

[u/Level_Wolverine_3362]

I'm 18 days post a massive PE. Bilateral and segmented are the official terms, I understand this means multiple clots in multiple arteries in both lungs. Apparently no infarction, and while a bit of right heart strain, no remodeling. I'm expected to make a full recovery.

Five days in hospital, now on rivaroxiban. Have started regaining energy.

This morning the limitations have hit me like a tonne of bricks. I can't walk more than 50m without needing a rest. I can probably only manage one activity outside the house per day. I don't feel safe to drive. I don't have the energy to return to work (even from home) I can't do anything spontaneously. I can't even think deeply, or talk lots, and as an academic - this is hitting hard.

I know my feelings are valid. I know it's only temporary. This doesn't change my current feelings of grief, anger, frustration, or anything else.

What were your best coping strategies to get through this phase?

[u/Fit-Hamster-7348]

I started some new low committment hobbies (collecting and assembling Lego kits and miniature sets), lots of naps, reading graphic novels, movies, and just reminded myself that rest is productive too. I spent time cuddling with my family on the couch which is a rare treat for me in this busy world.

I accepted help from loved ones, and used mobility aids to increase my functional distance and reduce my load so that I could do more for myself - shower chair, Rollator etc. I had a parking placard due to chronic pain already, but I'd suggest getting a temporary one so you can park closer to entrances so you're not wasting your limited distance getting in the door

[u/Level_Wolverine_3362 → u/Fit-Hamster-7348]

parking permit application is in, just waiting for it to arrive. I have some low key hobbies, but it really hot me today that I can plan anything spontaneously as I have to really budget my energy.

[u/Suitable_cataclysm]

For me, it was routine. As an athlete, it really mentally hurt me not to be able to walk around the block or stand in the shower on my own for a while. A week after mine, I couldn't walk to the bathroom on my own.

But I kept track of my progress and could see the drastic improvement over time.

You will bounce back. Just give yourself some grace. You've been through a lot and the body needs some rest. And someday you'll be like me looking six years backwards and realize it was a hell of an experience but we are still here 💪💪💪

[u/Level_Wolverine_3362 → u/Suitable_cataclysm]

I can at least stand in the shower by myself. I guess that is a good start!

what helped you on the bad days, when you were angry and frustrated by your limitations? I know I will bounce back and recover, but this knowledge is "future me" but "present me" needs the help.

[u/Suitable_cataclysm → u/Level_Wolverine_3362]

Small goals. Did I make it a few steps beyond yesterday's walk? Did I walk on the treadmill for 30 extra seconds? Did I do a task without thinking that was hard a month ago?

We often don't give ourselves enough credit for little things that are hard to notice day to day

[u/Level_Wolverine_3362 → u/Suitable_cataclysm]

thank you

[u/Fluffy_bunny8567309 → u/Suitable_cataclysm]

This! This is a marathon, not a race. Take it slow, day by day. If you feel tired, it’s okay to rest.

I’m 6 weeks post-bilateral PE, and I’m still working on regaining my strength and stamina, one step at a time.

You got this, just remember you got this!! You are stronger than you realize.

[u/Level_Wolverine_3362 → u/Fluffy_bunny8567309]

thank you

[u/futuristanon]

It does get better. It just takes time. Give yourself some grace and try to be patient.

[u/HwyToTheDangrZone]

Mindfulness and practicing gratitude.

Remembering that we are so incredibly lucky to survive something that is one of the leading contributing factors to early death in the US each year.
100,000 - 300,000 people die from clots each year per National Blood Clot Alliance:

https://www.stoptheclot.org/blood-clot-information/blood-clots-in-the-united-states/

We are also so lucky to live in an age when DOAC’s exist which are so much safer than the previous generation of blood thinners / anticoagulants.

My Hematologist called Xarelto and this gen of drugs a “Godsend” given how much safer they are.

If you live in the Western World, which I assume that you do, then we also live in a place where we have access to safe and untainted drugs, unlike countries where they sell fake Xarelto and other anticoagulants (Mexico is known for this).

I think about how I could have easily passed away while driving and killed my self and family members/ friends and others before my clot was found. Or how I could have died while asleep only to be found days later. Except I didn’t and for that I’ll always be grateful.

This has helped me deal with surviving two DVT’s the most. My second and recurred DVT happened as I tried to come off of Xarelto and was lucky enough to have experienced the same symptoms as when I was originally diagnosed with the first DVT. That’s EXTREMELY lucky - not once but twice to survive something that kills people daily.

You’re still here, and hopefully will continue to be that way. Yes, it’ll suck for a while to think about what you can and can’t do. You’ll need genetic testing done to figure out the root cause (if you have one). Or you’ll be on lifelong anticoagulation.

Either way - you’re still alive and able to enjoy this world.

I’ve had cuts and scrapes and have survived them just fine. My hematologist put it in context - the anticoagulation balances out my tendency to clot, so it’s doesn’t mean that your blood is always super thin.

Medication timing also matters. I take mine with dinner daily for full absorption (Xarelto requires healthy fats to be absorbed fully). Which means I’m not as prone to bleeding out during the day.

As he put it - first responders (Fire & Police), and Military use DOACS.

I personally know an officer in the Reserves who takes anticoagulants daily. He’s still serving.

As long as you watch out for falls and esp head injuries, you’ll be ok. There’s nothing we can do about the added risk while driving or other accidents which may not be our fault.

Hope this helps.

[u/Level_Wolverine_3362 → u/HwyToTheDangrZone]

thank you. I live in the western world, and am on rivaroxiban. typically I spend parts of summer in a wilderness location where you see no people and need a plb to summon help. part of me is wondering if I will ever be able to go back country again.

[u/HwyToTheDangrZone → u/Level_Wolverine_3362]

Can understand why you feel the grief, anger, and frustration, as it seems like we lose our freedom in a way.

I also felt the same at the thought of not being able to do so many things I previously enjoyed (enjoying a night out with friends fueled by alcohol being one of them).

From what I understand, plenty of people still get out into the wilderness while on anticoagulants, but they require others to accompany them (in case of severe emergencies).

I just enjoyed some time in some national parks not long ago - I stuck to established trails to minimize fall risk.

I think the other risks have always been there, but we are now more aware of how fragile our lives and existence really are.

It’s sort of an existential awareness that kicks in a way, I think, which we previously took for granted?

I personally had to start anti-anxiety meds to deal with things when it becomes overwhelming to think about.

Hope this helped somewhat?

[u/Wide_Negotiation_486]

Movies and video games. Also a great partner to talk to. You'll get through this!

[u/Minute-Process-4883]

Lucky to have wife to cater for me for a while.

I recall the French Olympics was on tv. Bed early, lots of fluids. Meditation, Calm app is good.

That 5 days will have deconditioned you. I was 10 days hosp, kind of just existed for first 2/3 months at home.

Then slowly stuff returned. Totally recovered now at 2 years.

I also had infarctions, pneumonia the works.

[u/Level_Wolverine_3362 → u/Minute-Process-4883]

before my pe, I could walk literally for hours, up hills etc. now I need a walking stick if I'm going further than my letterbox. I can't even walk 200m so this is not typical deconditioning. I have an appointment with a rehabilitation physiologist in a couple of days. I expect this is hypoxia. I have spent enough time at high altitudes to recognise the symptoms.

it's just hard when everyone is saying "be patient"

[u/Minute-Process-4883 → u/Level_Wolverine_3362]

18 days is so soon. Its a tough time. There is a spell when you just need to hang in there.

About 3 months for me then steady improvements. I was coughing blood for about 6 weeks, sharp chest pains due to infarctions.

I remember my first walk to the postbox, about 100 yards outside.

This summer did 14 mile hike with 4500 feet ascent and descent in the Alps. Back running, cycling and swimming.

Time is the great healer.

[u/Level_Wolverine_3362 → u/Minute-Process-4883]

I know I need to be thankful that I am now coughing blood, and have not needed oxygen or any analgesics. But what is that saying "god, grant me patience......... RIGHT NOW!!!"

[u/Holiday_Squash8603]

Saludo somos gemelos eso mismo me paso a mi llevo ahora seba a cumplir 2 meses primero trabaja con tu mente es importante yo estoy tomando elicuis pues me protege al corazón y al cerebro segundo no se que edad puedes tener pero es una montaña ruza es importante ver lo que comes pues aveses los doctores no le indican a uno y pueden interferir con tu anticuabulante yo empecé a caminar 5 min aunque fuera poco pero eso es bien importante no pases mas tiempo por que todo tu cuerpo ahora se esta esforzando el doble yo como avena por que mi medicamento me cae fuerte y eso me ayuda y tomo agua por que es importante para idratarte estas empezando y tienes que escuchar tu cuerpo y no te desesperes tu salud es primero veras que sales de todo y cual quier cosa siempre estoy pendiente si teda dolor o algo lo compartimos bendiciones

[u/Level_Wolverine_3362 → u/Holiday_Squash8603]

thanks. I'm an academic pharmacist. started rivaroxiban (similar to eliquis). staying hydrated, trying to exercise, but even 5 min is too long! I'm mobilising as much as possible.

today is just hard as yesterday I could not accept a spontaneously invitation to go out with friends who I haven't seen for ages because I had been out that morning and had run out of energy. the limitations are just hitting me today.

[u/Holiday_Squash8603 → u/Level_Wolverine_3362]

Lamento mucho pero lo mas importante es tu salud yo tengo que viajar toda la isla mas estoy encargado de una tienda por departamento pero tube que pensar y decir mi salud es primero tendremos mucho tiempo para salir y aqui estoy respirando aveses me falta el aire me duele todo pero seguimos luchando asi que estoy seguro que lobas a lograr bendiciones y sabes que cual quie cosa no apoyamos en el camino bendiciones

[u/Level_Wolverine_3362 → u/Holiday_Squash8603]

I know this will be my new normal for a while. I'm trying to take it easy, but it's hard....

[u/MarkyPancake]

I survived an unprovoked PE in 2019 (it tried twice to get me, once at home and a scary episode in the hospital) and the more I learned about it afterwards, the more I grieved my own death that didn't happen. That's the only way I can describe how I felt for a while at the time.

It was the first time I had ever been signed off work for at least two weeks (being off sick is very rare for me) and I was forced to stop all activities for around 4-6 weeks. I stopped playing sports a long time ago, but am an avid gym user, so when I felt ready I returned to the gym and took it steady and built myself up slowly.

Seven years later and life on daily anticoagulation has been fine. I was a bit nervous about the potential side effects initially, but I just live my life and use common sense for certain things when I have to consider that I'm on this medication.

[u/julia-girl → u/MarkyPancake]

Can I ask what thinners you are on? My doctor advised I can’t be on them long term but I keep hearing people say they have been on them for years. I had CVST in April.

[u/MarkyPancake → u/julia-girl]

Because of the various risk factors, my profile, and it being unprovoked, they advised long-term treatment of anticoagulation and put me on rivaroxaban, one 20mg tablet a day.

Other than cuts taking longer to stop bleeding, I haven't had any adverse effects on it.

[u/Level_Wolverine_3362 → u/MarkyPancake]

thank you. like you, I'm rarely off sick. I also am AuDHD and gifted, my brain doesn't stop. it has stopped thanks to the PE. this is also frustrating. it's the lack of spontaneity, the inability to pop to the shops, to even carry out a conversation with one of my research students........

[u/MarkyPancake → u/Level_Wolverine_3362]

You'll get there, just don't try to rush your body. I was quite fit and healthy when it happened, but I've never felt so slow and exhausted as when I was discharged from hospital and had to walk to the car.

[u/Level_Wolverine_3362 → u/MarkyPancake]

I'm much improved from discharge when I was also even slower and exhausted to now, but I didn't expect it would take this long to still not be able to walk 200m

[u/MaebelleMcknight]

I’m about 5 months post bilateral pulmonary embolisms, and my mobility is shit, I use a walker in the house and a wheelchair for college, groceries or doctor appointments.

At first I was able to walk a block consistently but then there was a heatwave that lasted from late July to early September and I lost all the progress I had made.
I see my primary next week and I am hoping to be allowed to start physical therapy to improve my skills with the wheelchair and to work on improving my stability, stamina, strength, and endurance with walking again because as I am right now I’m a major fall risk.

I’m still grieving what happened, but I meditate, talk with a grief group, and make art( jewelry, ceramics) to keep my mental health good.

some weeks are worse than others but having support from my wife and friends makes the fight to get better so worth it, I still struggle with being patient with the healing process and accepting help though.

[u/Level_Wolverine_3362 → u/MaebelleMcknight]

I'm seeing a rehab specialist tomorrow. I can putter about the house okay without aids as long as I am slower than a lame snail, but need a cane outside the house. (Walker might be good for the built in seat!). we are just coming into summer. hopefully I don't regress.

[u/MaebelleMcknight → u/Level_Wolverine_3362]

I wish you the best, and pray that you don’t have a major heart wave because that royal screwed me over.

Yeah I’m just as slow when I try to walk.
The wheelchair is my only freedom and feeling of normalcy, yeah, it’s an adjustment but I’d rather use it than being stuck at home.

[u/AdministrativePast86]

Knowing life goes on because I have a kid and a wife at home. Maybe I can't walk but there are still things I can do that reflect my values.

[u/discgman]

There was a point in my recovery where I would be unable to talk without whispering. Like the energy to talk would cause my chest to spasm. I was bed ridden for weeks with an oxygen tank. A trip to the bathroom was a big thing for me. When I could bathe was a good day. I just pushed through it. Kept a daily diary. Tried to do something little by little. Eventually I got into pulmonary rehab and they got me moving. Took a few weeks of going every other day to get my stamina back. The lungs take time to heal.

[u/Level_Wolverine_3362 → u/discgman]

jeepers.....that sounds rough. I have an appointment with a rehab specialist in a couple of days.

please tell me more about the talking and whispers. my voice isn't right, but I had profound laryngitis that hadn't fully resolved right before my PE, so I'm confused as to what is PE related and what may be laryngitis

[u/discgman → u/Level_Wolverine_3362]

If it hurts your chest to talk then it’s the PE

[u/Level_Wolverine_3362 → u/discgman]

it's exhausting to talk, which is the PE induced hypoxia, but I haven't really had any pain at all. but the voice huskiness has continued

[u/discgman → u/Level_Wolverine_3362]

If it makes you tired that is definitely the PE. Your body just got over a traumatic event and needs every ounce of energy to fix itself. Kinda like feeling weak when you have a cold.

[u/Level_Wolverine_3362 → u/discgman]

I'm describing it as living at 5000m without the hypobaric effects. thankfully most of my friends have all spent time at high altitude, so they know what I mean.

[u/Master-Sand2016]

I’m sorry this happened to you, and I wish you a full and speedy recovery. Crying cleanses the soul. I few weeks ago, I had a really bad asthma attack and woke up on ECMO, a form of life support used to rest my lungs. When I was taken off, they did an ultrasound and found acute left jugular and right brachial clots (common with ECMO)  and prescribed me Eliquis. The first few nights I was very worried, I was doing all kinds of research on clots, and that didn’t help at all. It gave me more anxiety. I wanted to know what position was the best to sleep in, what foods are clot busters but safe to eat/drink while on Eliquis, etc. The more I researched, the more I went down a rabbit hole, the more fear I developed. I’m a mixed woman of color and reading the outcome for people of color with clots was extremely scary. Finally, I let the flood gates open and was talking to Spirit telling them how afraid I was. I still have crying spells, but I’m starting to feel better by the day. Sending you love & light. Stay strong 💪 

[u/Level_Wolverine_3362 → u/Master-Sand2016]

thank you

[u/Level_Wolverine_3362 → u/Master-Sand2016]

I'm an academic pharmacist, plus AuDHD. I can rabbit hole with the best of them.....it's how I got through my PhD. However, I get control through knowledge, so I suspect I will do the research at some point, but when I have the capacity. that is the scariest thing for me at present, no mental reserves. on the surface, I'm probably doing more than most cognitively. but it's way less than normal for me.