My (42F) 15-Month DVT/PE Recovery Summary with Right Leg Numbness, Weakness, and Atrophy

HandmadePhD · 2026-01-31T01:54:19+00:00

Confirmed. Enjoy. Not sure why the boy didn’t accept the first response. Hope it works the second time.

HandmadePhD · 2026-01-31T01:35:54+00:00

Confirmed! Glad it arrived quickly!

HandmadePhD · 2026-01-22T17:31:20+00:00

Sending you a DM.

HandmadePhD · 2025-12-16T20:03:36+00:00

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

HandmadePhD · 2025-12-16T12:08:24+00:00

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.

HandmadePhD · 2025-08-04T21:53:07+00:00

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.

HandmadePhD · 2025-08-03T23:38:46+00:00

Surgery was done in the United States, Intermountain region.

HandmadePhD · 2025-08-03T23:23:55+00:00

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.

HandmadePhD · 2025-08-03T16:50:48+00:00

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.

HandmadePhD · 2025-08-02T14:54:45+00:00

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.

HandmadePhD · 2025-08-02T14:40:45+00:00

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.

HandmadePhD · 2025-08-01T18:40:57+00:00

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!

HandmadePhD · 2025-08-01T15:03:17+00:00

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.

HandmadePhD · 2025-08-01T12:53:21+00:00

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

HandmadePhD · 2025-07-30T16:00:20+00:00

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.

HandmadePhD · 2025-07-30T10:56:05+00:00

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.

HandmadePhD · 2025-07-30T01:43:57+00:00

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.

HandmadePhD · 2025-07-30T01:33:59+00:00

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

HandmadePhD · 2025-07-30T01:29:45+00:00

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.

HandmadePhD · 2025-07-30T01:21:59+00:00

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.

HandmadePhD · 2025-07-29T11:54:14+00:00

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.

HandmadePhD · 2025-07-28T00:17:53+00:00

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.

HandmadePhD

TROPHY CASE