Back in early April started getting a bad pain one morning, and had the typical response of "how the hell did I pull a groin muscle?". Fast forward about 6 days and the pain all of a sudden the pain moved mostly to my calf. Off to the ER I went thinking it was nothing too crazy but wanted to make sure.

With my symptoms they fast tracked me into getting an ultrasound of my right leg and the doc said "we think it's a clot, just gotta see". Within 5 minutes if coming out from it the doc walked out to me in the waiting room and said "it's extensive sending you for a cat scan of your chest". They got me back within next 10 minutes for it and back to waiting room foe about another 10 minutes when they got me into a room and let me know that I had two clots in my lungs and clot in leg was from groin all the way to my ankle, big time bad.

Spent nine days in the hospital, two thrombectomy's, the clotting all came back after the first one within 48 hours. After second one they thought I was doing better but still hurt like hell, full clotting back again.. They sent me home to rest for a week and had appt for another ultrasound, hoping the blood thinners would break up the clot. Pain was less severe at least.

Had ultrasound and the doc came in room afterward and said "go back to the ER and tell them we sent you". Ended up having three more surgeries done, involving them shoving sheaths in my right leg that leaked blood thinner directly into my veins. Pain level "hell", I was given fenganyl during the surgeries to dull the pain but kept awake during the 4+ hour surgeries. I yelled many times during these, luckily the interventional radiology operating rooms are away from other patients. Worst pain I've ever experienced in my life.

In ICU for 5 days after that due to the sheaths in my right leg for 48 hours (they rekmoved the sheath and put in a larger ine after 24 hours, plus stuffed one in my ankle when they did that). Dilaudid every 3 hours,ocycodone every 6, I kept up with the timing and was buzzing the nurse to remind em to bring the meds. Maybe a few hours sleep in those five days. On day 5 after the sheaths had been out for 24 hours they let me try to get up. Bring in some more screaming when I first stood on right leg, felt like an ice pick went through my ankle. I sat back down and was like "no, ain't getting up". A few hours later some ladies from PT came in to talk to me and they helped get me up on my feet. With help of a walker I walked about 100ft in total. Hurt but was doable.

Got moved into a step down unit and the pain was better, Opted to only get the oxygen every 6 hours and drop the Dilaudid fe9m the routine, even though it felt so good to be totally pain free for a half hour each time. Next day they mentioned me possibly going home, which I said "get me our of here!". Got home and got in bed, I lt getting out to use the bathroom for a week, with leg elevated all day/night.

After a full week of laying in bed I attempted to go back to work. Luckily work from home in IT so just had to venture to upstairs office. Put in half days at first but started working full days this week. Hurting by afternoon, but making sure to get up every hour or so to stretch. Feels great to be "productive" again. Work has been great about it let me use pto for all the time I missed (over 200 hours so far), and the other two managers have been splitting up my workload while I'm out.

Back to vascular doc tomorrow for ultrasound and to see how things are going, at best looking at being on blood thinners rest of my life (killing some of my hobbies that are risky) and worst case is going back into hospital for more surgeries.

Moral of the story, take care of yourself,don't sit too long at a time,get more active! I'm only 52, and almost died from this. Got lucky with where the lung clots went, thinners seemed to have broken them up. Already lost 30 pounds since early April and don't even drink sodas but ONE per week now. Diabetes is under control now and looking to drop my med dosage after that docs appt tomorrow also.

Take care of yourselves guys, getting a DVT/PE combo has been a miserable and insanely painful thing. And could have been prevented if I'd taken better care of myself already. This sucks!

And sorry for the novel length post, I've not been active on here in years so there's probably nobody that remembers me from when I did used to participate in the forum, but I've been getting back in and catching up on posts here lately, starting when I was in the hospital. Coming up on my 23 year anniversary on sigforum
- Larry

Glad you are still with us.

Prayers and hope to you.

I read it through and take it to heart.

That sounded like it was way too close to disaster. Glad to read you're mostly thru this.

Did you learn why you were so susceptible to this level of clotting?

Prayers for recovery and a good outcome moving forward for you brother.

Sorry to hear about your ordeal and happy you have survived, unfortunately, many do not. Being on blood thinners is not too bad, especially some of the newer ones. I have a genetic trait that causes blood clots in the lungs but can cause clotting elsewhere which I was unaware I had until I had nasal surgery back in 2001. The clot was so large that when it passed through the heart that it permanently enlarged the opening. I don't know how many times I passed out at home and in ambulance as they lost count but somehow, I made it through the ordeal and four other episodes over the years. Main thing is recognizing your symptoms and getting help immediately if any start coming on even if results in false alarm because this is a case of better being safe than sorry. Yeah, you will need to make some lifestyle changes but not so many as you might think. My biggest hassle is having any surgical or dental work as I have to come off the blood thinner and in my case the time off usually exceeds my time before clots start forming so I end up having to bridge with something like Heparin and that involves giving myself a shot in the stomach every day before the procedure. Just find the blood thinner that works for you and never miss a dosage. Thank God for a second chance and make the most of it.

Damn, Larry. Best wishes and hope this is all under control soon.

quote:

Originally posted by preten2b:
Did you learn why you were so susceptible to this level of clotting?

That's the scary part, the docs haven't been able to find a root cause and they've run practically every blood test known to man at this point.

Best wishes. With all the blood thinners you are on make sure that your doctors are having a CBC run to keep an eye on your hemoglobin levels. Because you are now a prime candidate for Gastric Bleeding and that can happen WITHOUT seeing black stools. BTW, if you see Black Stools even once make sure to call your doctor about it immediately. Because those single day events I ignored because they seemed to clear up on their own.

My issue is Heart Disease and due to a couple of stints in the LAD and concern about issues with AFIB I was on Plavix and Xaralto for about a year and a half. March 7 of this year I had a Hemoglobin crisis with a count of only 6.6 and had to spend the weekend flat on my back in the hospital getting a pint of whole blood and lots of testing. It turned out that addition of Xaralto to my treatment protocol cause chronic Gastric bleeding which then triggered the AFIB I suffered thru starting in spring 2024. Now I'm taking Aspirin plus Eliquis and my latest CBC showed a hemoglobin of 12.8, darned near getting into the normal range.

Finally when you are strong enough talk to your Doctors about walking for Exercise. Because walking for an hour every day will improve your overall health tremendously. Perhaps enough to get your need for blood thinners reduced. I started walking in 2015 and making that a habit is the reason why I am alive today at 70 years old.

quote:

Originally posted by low8option:
Yeah, you will need to make some lifestyle changes but not so many as you might think. Just find the blood thinner that works for you and never miss a dosage. Thank God for a second chance and make the most of it.

The main change as far as hobbies is at least for foreseeable future no mountain biking. Even a minor crash could be pretty bad. The first thinner didn't seem to really help but the second one the hematologist wanted to try seems to be working. When a nurse screwed up a blood draw in my left arm I saw just how well the oradaxa is working... A small needle poke caused what looked like I'd been sliced open with a butcher knife.

I do now also carry a small sling bag with me that's geared toward "stop the bleed" first aid gear. If i leave the house it's coming with me.

Larry, glad you are doing better.

That sounds like an awful ordeal. Glad you made it. Praying you fully recover.

Did you ever get the corona vaccine? My coworkers neighbor never had any health problems until she got the vax and then all of the sudden had clots and unfortunately died.

quote:

Originally posted by ruger357:
That sounds like an awful ordeal. Glad you made it. Praying you fully recover.

Did you ever get the corona vaccine? My coworkers neighbor never had any health problems until she got the vax and then all of the sudden had clots and unfortunately died.

Actually never got any 'rona vaccines but I know for sure I've had covid a good 7-8 times or so. From 2019-2023 I was working on site with a medical group we had as a client (working in IT), with 14 locations in the area and was around way too many people all day every day. When the world pretty much shutdown around here I was in doctors offices daily, surprisingly didn't get covid first time until August 2020.

Most doctors publicly always pushed the vaccine and I even had one go off on a rant about how only selfish idiots would NOT get it. But in private I've talked to a few about it (infectious disease specialists) and the overwhelming consensus is that the vaccine is possibly just as harmful as helpful and not to have ever gotten it.

With such a severe case so young, I hope your medical team investigated if you have any underlying disorder like factor 5 leiden that predisposed you to clots. For most young people, risk factors include smoking and long periods of immobilization like prolonged seated trips or possibly in your case working seated for long periods of time without getting up. A good friend of mine who works as a tech for a security company, troubleshooting bank vaults and security systems, developed a leg clot with his long hours of driving a likely cause

Do you have to maintain this lvl of blood thinner?
I would think once the clots are dissolved you could revert to a milder dosage.
Or am I misunderstanding and you are on a milder dose already?

Hang in there and glad you're doing ok.

I'm sorry to hear what you went through, Larry, but really glad you're able to post about it and warn us to be active.

Take care of yourself and look forward to reading from you well into the future!

Sounds like Factor 5 Leiden or a variation thereof. Controllable with injectable Lovenox and oral meds such as Xarelto or Eliquis. Exercise is important as well. Of course that is just speculation since we do not have a definitive diagnosis as of yet.

Glad to hear that you are getting better. DVT/PE is very dangerous.

My 56 year old sister had an accident last February and broke her right ankle while on vacation in Hawaii. They had to do an emergency surgery to fix the broken bone, which involved 8 pins. She had to take off from work. She had to wear a boot, use crutches and scooter to move around. After a month of not being able to walk, she experienced pain on her right, lower leg. She went to her PCP and did ultrasound. They found 3 clots. They sent her home with oral medication to dissolve the clot and instructed her to monitor for any sign/symptoms of chest pain and/or shortness of breath. Two week later, she did experience those symptoms. She went to ER. They found 4 clots in her lungs (PE). She stayed for 2 days in the hospital. They sent her home with Lovenox and had to self-inject for 3 weeks.

DVT/PE is very dangerous.

Thank you for the “novel long post” and excellent description of your horrible ordeal.
I hope things continue to improve and say steady.

quote:

Originally posted by dsiets:
Do you have to maintain this lvl of blood thinner?
I would think once the clots are dissolved you could revert to a milder dosage.
Or am I misunderstanding and you are on a milder dose already?

Hang in there and glad you're doing ok.

I'm on 150mg of pradaxa twice a day,and the hematologist is likely going to keep me on them long term,went back to vascular interventional docs today for an ultrasound and the lower leg still has some clotting but the veins being so small all they're wanting to do is keep my current dosage and to start walking daily, and work up to a good half hour plus of "brisk" walking. Right foot and ankle is still fairly swollen also.

I wasn't hurting too bad this past week but after the ultrasound my ankle and lower leg was killing me afterward so I took my last pain killer when we got home. Feeling great since then but it's basically worn off.


One of the scariest things is not having a definitive "answer" on why it happened but the past 8 months or so my blood pressure was getting higher and higher, wasn't eating like I should be and my a1c was 10.1 (with stress from job and kids I was WAY off on my diet). So it IS possible that my lack of taking care of myself played a larger part in it happening.

My hematologist/oncologist I've been seeing has run practically every test known to man, but haven't found anything. And another helpful bit of info is that my wife knows one of the best hematologist/oncologists in TN and he have some suggestions for us to pass to my doctor. When he heard who made suggestions he actually did run further tests, and they also did a full ct scan from my upper chest to my legs looking for anything/everything that could be a factor.

Also saw what my medical bills are up to so far... Just the charges from the hospital are at $306k... met my deductible for damn sure, 87 times over. So picking up my 3 month supply of pradaxa from Walgreens was "no charge".