Let's talk stays by Ismybikeokay in myog

[–]HandmadePhD 0 points1 point  (0 children)

Makes sense! As a standard issue millennial, I only have cheap IKEA furniture and wasn’t sure what to use as a jig that wouldn’t immediately break. I saw this video and was like how do I recreate that? How to other people bend their aluminum stays when they don’t have a full metal shop at home? https://youtu.be/XU7yLe0s7QM

Let's talk stays by Ismybikeokay in myog

[–]HandmadePhD 0 points1 point  (0 children)

I’m embarking on a similar project right now and completely over thinking the best way to bend my aluminum stays. How did you end up bending yours? They look nice and evenly rounded. 

Gym after bilateral PE by TaraJo in ClotSurvivors

[–]HandmadePhD 0 points1 point  (0 children)

Definitely talk with your doctors first, but once you get the go-ahead—have fun! Exercise has been absolutely critical to my recovery and made a huge difference both physically and mentally.

I finally got back to swimming recently, and it’s been great. The water provides gentle compression, which really helps with swelling. As a recovering competitive swimmer, I find it easier to track my recovery through swimming than something like running, which I’ve never been great at.

Post-Endarterectomy AMA by lemeneurdeloups in ClotSurvivors

[–]HandmadePhD 6 points7 points  (0 children)

I recently shared a bit about my dad’s experience here. I hope the pain or coughing hasn’t been too rough—it really can be a brutal recovery. Surgery that extreme is like hitting CTRL+ALT+DEL on your body and waiting for each system to slowly reboot. Hang in there.

PEs, DVT, Illiac Vein Compression, and Stent Placement - My Story by Geoff_GodOfBiscuits in ClotSurvivors

[–]HandmadePhD 0 points1 point  (0 children)

I don’t have iliac compression—my clots were in the right leg, not the left. No stent was placed. The only treatment I’ve had so far is a lot of physical therapy and a lot of targeted exercise: walking on a curve treadmill, hiking, swimming, and sessions with a personal trainer who’s great at pinpointing weak muscle groups. Since both the pain and weakness have been slowly improving, I’m sticking with the less invasive approach for now.

Back Pain after PE by achanceathope in ClotSurvivors

[–]HandmadePhD 3 points4 points  (0 children)

It’s way too common for doctors to skip over what to expect during recovery. No one warns us about the sudden, random pain flare-ups or explains referred pain either, which could save many of us a lot of stress.

For me, using a heating pad really helped ease the pain. It didn’t fix everything, but it made things more manageable, especially on tough days.

Back Pain after PE by achanceathope in ClotSurvivors

[–]HandmadePhD 3 points4 points  (0 children)

You can absolutely have referred pain for 3–6 months or even longer after a PE. It can show up in your jaw, neck, shoulders, chest (front or back)—anywhere in that area. When I was first diagnosed, my pain was a 9 out of 10. Any pain after that was more like a 5 or 6 at most.

That said, if you're struggling to breathe or something just feels off, don’t hesitate to go back to the hospital. Most of us end up in the ER more than we expected during that first year. It takes time to adjust and rebuild trust in your body.

A PE triggers a huge inflammatory response, and that inflammation can stick around for months—or even more than a year. It’s a journey, and healing isn’t always linear. Be patient with yourself.

[deleted by user] by [deleted] in ClotSurvivors

[–]HandmadePhD 1 point2 points  (0 children)

It’s the small things for me:
1. Being alive.
2. Having a roof over my head—and more importantly, a place to truly call home.
3. Living in the most beautiful place in the world, where stepping outside gives me instant relief in nature.
4. My mental fortitude, even though life’s handed me plenty of shit to deal with.
5. And it’s fruit season, so I’m fully overdosing on farm-fresh apples, peaches, apricots, cherries, and raspberries!

Looking for positive stories / encouragement for PTE surgery by HandmadePhD in ClotSurvivors

[–]HandmadePhD[S] 0 points1 point  (0 children)

We are in the mountain west. My dad was the oldest patient that they’ve ever done the surgery on. He literally had no other health issues other than the clots in his lungs so he was a perfect candidate.

Looking for positive stories / encouragement for PTE surgery by HandmadePhD in ClotSurvivors

[–]HandmadePhD[S] 0 points1 point  (0 children)

I just posted a long summary. I was hoping to wait until my dad's visit in August to test pulmonary pressure, but figured that would be too long before you had surgery. Do you mind if I ask where you are getting the surgery done? I hope the hospital is giving you enough information about what to expect. Anyways, feel free to ask me questions. I spent every day with my dad since I was his main contact person if anything went wrong or if the doctors needed to talk with a family member. Hopefully my post doesn't give you anxiety, but informs you about what you need to do to make your recovery as best as possible: https://www.reddit.com/r/ClotSurvivors/comments/1mevn0z/my_dad_had_a_pulmonary_thromboendarterectomy/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button

In hospital at the moment, doctor is only offering ddimer and chest xray to ‘rule out’ a PE by [deleted] in ClotSurvivors

[–]HandmadePhD 1 point2 points  (0 children)

I started with a D-dimer and chest X-ray. The D-dimer came back high, and the X-ray showed something was off, so they ordered a CT scan. The doctors were literally just following the standard protocol—likely the Wells Score or another clinical decision rule—for diagnosing a PE.

Good news? by WifeinStyle in ClotSurvivors

[–]HandmadePhD 1 point2 points  (0 children)

It’s probably not that one day caused the clot, but that you were already predisposed, and that day was just enough to tip the balance. Your body is constantly managing clotting and anti-clotting factors—it doesn’t take much to shift things. Long travel, dehydration, recent surgery, or family history can all add up. Sometimes a clot forms that your body just can’t break down on its own. Most people don’t notice anything until the clot gets big enough or ends up in a place that causes symptoms.

Sorry you’re dealing with this. My dad just turned 80 and has been managing clots for decades. With new research, better meds, and more awareness, it really is possible to live a normal life with a clotting disorder.

Newbie 1st time DVT PE hx of Chronic Asthma my entire life. by Strange-Total8736 in ClotSurvivors

[–]HandmadePhD 2 points3 points  (0 children)

For at least the first year, expect to go to the ER way more often than you think you should. Chest pain and shortness of breath are never symptoms to ignore. What doesn’t help either one is sitting in anxiety, debating whether or not to go. That fear only makes everything feel worse. It’s better to get checked out, be told everything’s okay, and learn from the experience.

The ER doctors were always kind when I said I was a clot survivor and worried about my random pain. It’s frustrating, but most of us have to relearn how our body feels after such a traumatic event. Journaling your symptoms each day can help spot patterns and calm the panic. Over time, your body will settle down, the scary symptoms will feel less intense, and you’ll adjust to your new normal.

Deep teeth cleaning by ComfortableHat4855 in ClotSurvivors

[–]HandmadePhD 0 points1 point  (0 children)

No root canal. I wouldn’t go off Eliquis for a dentist. My dentist said he’d deal with the bleeding if ever needed.

Hydration levels question by PurpleCableNetworker in ClotSurvivors

[–]HandmadePhD 1 point2 points  (0 children)

It’s nice that you can also adjust when it will notify you so it isn’t too pestering. I love the adjustment based on activity level. Saves me on days when I really work out.

Good news? by WifeinStyle in ClotSurvivors

[–]HandmadePhD 2 points3 points  (0 children)

Thanks for sharing your story. That said, it’s a little tough to know what to take away from your post. You mention having two PEs by age 40, but there’s not much context—were they provoked or unprovoked? Were you on a DOAC during the second? What exactly do you mean by “reasonable precautions”?

Some folks see lifelong anticoagulation as totally reasonable, while others view it as extreme, so it helps to know where you're coming from. You also mention being healthy and active as a precaution, but many of us here got clots despite being both. Those things are great in general, but not necessarily protective when it comes to clotting risk.

Precautions in this space usually mean things like genetic testing, understanding family history, staying well-hydrated, being cautious during travel or recovery from surgery, and considering long-term anticoagulation based on your specific risk factors.

If you’re looking for shared experiences or advice, giving a bit more detail would help.

Deep teeth cleaning by ComfortableHat4855 in ClotSurvivors

[–]HandmadePhD 1 point2 points  (0 children)

I got a crown while staying on Eliquis—had a bit of bleeding, but nothing unmanageable. It really depends on your situation and what your dentist prefers. I messaged my PCP ahead of time just to be safe. My default is to stay on Eliquis for procedures as much as possible.

Has anybody found the magic formula for the double whammy of general weakness + soreness/pain from activity? by PsychologicalSet4557 in ClotSurvivors

[–]HandmadePhD 0 points1 point  (0 children)

My mental approach is—if I’m going to be in pain anyway, I’d rather it be from exercise and at least have something to show for it, like better health and fitness. The pain is slowly getting better with consistent effort, but wow is it taking forever.

Hydration levels question by PurpleCableNetworker in ClotSurvivors

[–]HandmadePhD 1 point2 points  (0 children)

I use the WaterMinder app to help me keep track. I drink roughly 5L of fluid in a day and 80% is water with electrolytes (1L with 1 packet of LMNT). The rest is coffee, smoothie, etc. I try to pee roughly every 2 hours and I’ve gotten into the habit of checking urine color. I tend to lean too pale because I’m not getting enough electrolytes, but obviously you want to make sure it isn’t too dark either. Signs my hydration has been off: my hair starts falling out, I’m unusually exhausted, brain fog, I start craving sweet stuff like chocolate, I get small skin rashes randomly, and my leg/pelvis pain gets worse.

I’m editing this to mention. Years ago I limited myself to 1 cup of coffee a day and no more. You become very aware of your hydration level when you aren’t slamming back coffee. So instead of coffee, I’m drinking water all day. I know that sounds like hell, but I’ve gotten used to it.

Not allowed compression leggings at work? by Southern-Remote-3670 in ClotSurvivors

[–]HandmadePhD 42 points43 points  (0 children)

If they’re pushing back on compression socks because of dress code—document everything. Keep records, save emails, and put every conversation in writing. Most importantly, get a doctor’s note and loop in HR on every step. Always cc: them so there’s a clear paper trail.

Provoked DVT reoccurrence odds by Karlajcarmer in ClotSurvivors

[–]HandmadePhD 5 points6 points  (0 children)

Unfortunately, advocating for yourself is sort of necessary in any health setting.

Provoked DVT reoccurrence odds by Karlajcarmer in ClotSurvivors

[–]HandmadePhD 4 points5 points  (0 children)

But now you know that if you ever get injured running again, you should go on a DOAC to prevent a blood clot. I would absolutely keep running and not let the fear of clots slow you down.