Pulmonary Embolism

[oldskool67]

Hi all,

Not sure where to post this. Did a search and didn’t find much. Back on Dec 31st I went to the ER and was found to have a massive bi lateral pulmonary embolism as well as several smaller ones and infarction ( dead lung tissue) The infarction was a result of two earlier trips to the ER where my heart was checked but not my lungs, even though my breathing was getting worse. They don’t know why I got the initial blood clot so I will be on anti coagulants for life. Anyway besides the side effects from the anti coagulants and general recovery I’ve been pretty miserable. The virus going around now isn’t helping either since my lungs are compromised.

Sorry this is not to get any sympathy but to see if anyone here has gone through something similar and been able to still hunt the mountains. I’m concerned about altitude and my reduced lung capacity. It’s too early to tell if I will get back near 100 percent. I also have slightly elevated pressure in my heart from the blockage. If it doesn’t return to normal then I will have more issues. Right now I’m up to walking 2.5 miles with slight hills but not pushing it until after my next echo to check heart pressure. Doctors are great but none of mine understand that even though I’m old and on the far side I’ve always been athletic and very active. They think I should just be happy not having checked out from this. It’s very frustrating. Anyway I hope everyone is as well as possible in this unprecedented time. Thanks for listening

 

[rooster440]

I have no experience with that but I am wishing you a speedy and solid recovery! Take care!


Sent from my iPhone using Tapatalk

 

[Theringworm]

They didn’t find a source? Lower extremities are clear from DVT’s (deep vein thrombosis), you don’t have an irregular heart rate (I.e Atrial fibrillation), you don’t have a hypercaogulable clotiing disorder such as a Protein C or S deficiency, you don’t have cancer/lyphoma, you aren’t a smoker, do you sit stationary for prolonged periods of time (I.e. travel in a car, plane etc). These are just a few of known underlying causes of venous thrombosis that lead to clots in the lung. You can google others that I have missed. If I were you, I want to know the cause.

With COVI-19 going around you definitely need to use precaution. Depending on the amount of remodeling done to the heart you have a high chance of developing right sided heart failure. There are medications for that and I suspect you are likely already on something to help with that or prevent it from getting worse.

Did they attempt braking up the clot by floating a catheter up against the clot and dripping medications to breakdown the clot?

To answer your exercise questions, follow what is recommended by your physician. What you are currently able to do does sound reassuring. The follow up echo will be very informative for you and your physicians as to how they guide your therapy. Your recovery and active medical management will predict your ability to exercise or not. Listen to your body and don’t ignore symptoms. Some have a complete resolution and return back to normal activity, others do not. There is so much factored into it all. I can't and won’t provide medical advice via a forum, but educating yourself with reliable sources and listening to your current caregivers should be helpful.

 

[Wyatt.Carter]

best wishes on a speedy recovery!

 

[oldskool67]

They didn’t find a source? Lower extremities are clear from DVT’s (deep vein thrombosis), you don’t have an irregular heart rate (I.e Atrial fibrillation), you don’t have a hypercaogulable clotiing disorder such as a Protein C or S deficiency, you don’t have cancer/lyphoma, you aren’t a smoker, do you sit stationary for prolonged periods of time (I.e. travel in a car, plane etc). These are just a few of known underlying causes of venous thrombosis that lead to clots in the lung. You can google others that I have missed. If I were you, I want to know the cause.

With COVI-19 going around you definitely need to use precaution. Depending on the amount of remodeling done to the heart you have a high chance of developing right sided heart failure. There are medications for that and I suspect you are likely already on something to help with that or prevent it from getting worse.

Did they attempt braking up the clot by floating a catheter up against the clot and dripping medications to breakdown the clot?

To answer your exercise questions, follow what is recommended by your physician. What you are currently able to do does sound reassuring. The follow up echo will be very informative for you and your physicians as to how they guide your therapy. Your recovery and active medical management will predict your ability to exercise or not. Listen to your body and don’t ignore symptoms. Some have a complete resolution and return back to normal activity, others do not. There is so much factored into it all. I can't and won’t provide medical advice via a forum, but educating yourself with reliable sources and listening to your current caregivers should be helpful.

Thank you for your reply. Yes there was a clot behind my right knee that is mostly dissolved now. Apparently I do not have any genetic clotting factors. I’ve been a police officer for 25 years and also in the National Guard. I have been very active and no long flights etc. My body weight is high but I am not a smoker. I was able to just go on an IV drip then shots and oral Pradaxa. They told me that because I exercise a lot my strong heart kept blood moving through the blockage, even though I had a very large clot. Apparently my right side heart pressure is only slightly elevated ( normal high ) my right ventricle and valves are normal size and functioning normally. I’m only on the Pradaxa for now. Just did another 14 day heart monitor because I still get what I think is abnormally low HR and chest pain etc. Its hard to tell what the symptoms are caused by, Pradaxa, infarction, heart, anxiety, etc ? I went back to the ER a few times during the first two months. I finally gave up trying to get any answers. I’m told it’s a time issue. If I went in for every scary symptom I get, I would never leave the hospital. It’s very frustrating

 

[Theringworm]

Great to hear, sounds like you were lucky. Outlook, from what you have mentioned seems to be good from what you have told us. You have a lot going on, new meds, remodeling of the heart, body adjusting to infarcted portions of the lung etc. Add to that all of the stress and anxiety I can totally understand your concern. It really is a day by day, take it as it comes approach. Sounds like your exercise efforts now are good and recent studies are reassuring. Life occasionally knocks you down, temporarily or long term. Don’t lose hope. As long as you make it known your desires as far as activities and exercise goes to your clinicians and caregivers they should be able to assist in helping you push towards reaching goals to improve and get back to “normal”. Whether that’s a “new normal” that you aren’t use to or your base line normal, time will tell. Keep your head up, don’t lose hope, and don’t give up.

 

[rayporter]

i have lung trouble too and it keeps me out of the hi country now. hate that the most.

good luck

 

[SouthernShooter]

My wife had a very similar thing happen about 6 years ago. Tripped on the door mat walking in Church fellowship hall and bumped her knee. About a week later the blood clot passed from her leg to her lungs. 1 very large clot and several smaller ones. She still has some trouble with her leg selling from time to time but is back to close to 100% lung function.

 

[Marble]

Thank you for your reply. Yes there was a clot behind my right knee that is mostly dissolved now. Apparently I do not have any genetic clotting factors. I’ve been a police officer for 25 years and also in the National Guard. I have been very active and no long flights etc. My body weight is high but I am not a smoker. I was able to just go on an IV drip then shots and oral Pradaxa. They told me that because I exercise a lot my strong heart kept blood moving through the blockage, even though I had a very large clot. Apparently my right side heart pressure is only slightly elevated ( normal high ) my right ventricle and valves are normal size and functioning normally. I’m only on the Pradaxa for now. Just did another 14 day heart monitor because I still get what I think is abnormally low HR and chest pain etc. Its hard to tell what the symptoms are caused by, Pradaxa, infarction, heart, anxiety, etc ? I went back to the ER a few times during the first two months. I finally gave up trying to get any answers. I’m told it’s a time issue. If I went in for every scary symptom I get, I would never leave the hospital. It’s very frustrating

Are you at a regular ER hospital, or did you see l out a specialist? When I say specialist, I mean someone who not only specializes in what your issues are, but is known through out their arra of expertise as being the best.

I say this out of my own personal expereince, having idiotic doctors and staff utterly fail, only to experience the best of the best later. Where you go matters.

 

[slatty]

Glad to hear that you are making a recovery and wishing you well.
An important thing to realize about the treatment is that the type of blood thinner that you are on doesn't dissolve the clot, it only prevents further clot. Your body dissolves the clot. So essentially what that means, is that your treatment is time, 3-6 months, while the medication prevents further clot. I would personally avoid any active clot breakup methods (wire catheter, lytic medications), unless I am dying. I say this from the perspective of someone who has given these treatments to someone dying of a massive pulmonary embolism. Anything that is a powerful treatment can have powerful side effects.
Hopefully you start to feel better and better with time and get back to the high country. Anything you are doing to exercise within your means and recruit additional lung is a positive thing.

 

[Krustyroo]

oldskool67 glad you are recovering. The men in my family have a history of Factor 5 Leyden. When my youngest son was 15 he got DVT, and we discovered he has F5L. I got DVT two years ago, and discovered the F5L. My father had a P E a couple years ago at almost 80, and repeat F5L. We all beat our issues with Lovenox injections, and Warfarin/Coumadin. Having a test every 4-5 weeks to check your INR levels is no sweat. My son was briefly placed on Pradaxa and got DVT again. My father took a couple months to get back into fighting shape after the P E. He stayed active, hydrated and motivated. We all use compression leggings, socks, tights. All I can say is they work for me. Stay healthy. Krusty.