Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
Hi guys,
I am looking for some advice on PE recovery, but would also like to share my experience for any other inexperienced PE survivors, in case it can help in anyway. I am a 26 year old male.
**MY EXPERIENCE**
I suffered a PE, right lower lobe, on the 8th of Jan 2014. I also had Pneumonia at the same time. Docs were unable to agree if the pneumonia caused the clot, or if the pneumonia occurred opportunistically after the clot occurred.
My symptoms, I am told, were completely atypical of PE so it took a while for the Docs to figure out what was going on.
The symptoms I came in for were extreme pain in my right lower side and shoulder tip pain, causing my stomach muscles to spasm. I also had breathlessness. Over the next 24 hours, I also developed a low grade fever, fatigue and pain in my ribs.
I had a battery of scans (chest X-ray, CT pelvis, CT abdomen, CT PA). After diagnosis (CT-PA was the one that got it), I started the heparin and warfarin treatment, as well as a 7 day IV antibiotic course for the pneumonia.
I was in hospital for 8 days in total.
I also had an Echocardiogram and was hooked up to an ECG during my stay I was told my heart was fine.
Anticoagulation wise, I was on heparin for about 1 month as well as warfarin, as my dosage was raised very slowly. When I got to the 10mg dose, I have been therapeutic all of the time. Strange how a difference of 1mg daily made such a difference to my INR, literally from 1.6 to 2.3.
I have been going to my anticoagulation clinic once a week, but now I have been changed to 2 a month.
Warfarin makes me have small itchy welts on my skin, mainly on shoulders, chest and sometimes face. There were never more than 10 at a time. However, I now take Clarityn to help with this, and after 3 weeks of antihistamine tablets, my welts are more or less completely gone. In terms of anticoagulation, I have been therapeutic all the time (apart from at the start as described but was on heparin then) with an INR of between 2-2.8. Clarityn DOES impact your INR as per my clinics advise and my own experiences; it raises it slightly. This was actually very helpful for me, as taking 1 tablet a day helps keep my INR around 2.5, which also made my clinic happier.
So thats my intro done, I now would like to ask some questions on the recovery process.
**ADVICE ON RECOVERY PLEASE**
I am 2 months and 1 week into recovery. Compared to where I was 2 months ago, I feel much much better. I cannot believe how much of a toll this experience has had on my body.
-My vision was extremely blurry when I came out of hospital. This has improved over time, I am now at about 92% of original vision. I think this will be fine with time as body recovers. I have had this checked out, no one seems to understand why there was a change. Anyone else experience this?
--About 4 weeks into recovery, I started getting the odd feeling of tightness in my chest. This intensified and became more frequent during weeks 6-7, but then completely stopped. I have not yet had this again at all. Was this sensation normal post PE?
-At around week 7, I started experiencing discomfort in breathing. It is not the same as the breathlessness I experienced at the time of the PE, that was real I cant breath properly if I walk, but I do feel mildly breathless at times, especially when walking, and way more conscious of my breathing. I think more laboured breathing is a good way to describe it. Hot and cold temp changes seem to make it worse. Is this normal?
-Do i need to get another heart echo done at any stage?
Thanks for reading this and any advice you can give
IndyH
I am looking for some advice on PE recovery, but would also like to share my experience for any other inexperienced PE survivors, in case it can help in anyway. I am a 26 year old male.
**MY EXPERIENCE**
I suffered a PE, right lower lobe, on the 8th of Jan 2014. I also had Pneumonia at the same time. Docs were unable to agree if the pneumonia caused the clot, or if the pneumonia occurred opportunistically after the clot occurred.
My symptoms, I am told, were completely atypical of PE so it took a while for the Docs to figure out what was going on.
The symptoms I came in for were extreme pain in my right lower side and shoulder tip pain, causing my stomach muscles to spasm. I also had breathlessness. Over the next 24 hours, I also developed a low grade fever, fatigue and pain in my ribs.
I had a battery of scans (chest X-ray, CT pelvis, CT abdomen, CT PA). After diagnosis (CT-PA was the one that got it), I started the heparin and warfarin treatment, as well as a 7 day IV antibiotic course for the pneumonia.
I was in hospital for 8 days in total.
I also had an Echocardiogram and was hooked up to an ECG during my stay I was told my heart was fine.
Anticoagulation wise, I was on heparin for about 1 month as well as warfarin, as my dosage was raised very slowly. When I got to the 10mg dose, I have been therapeutic all of the time. Strange how a difference of 1mg daily made such a difference to my INR, literally from 1.6 to 2.3.
I have been going to my anticoagulation clinic once a week, but now I have been changed to 2 a month.
Warfarin makes me have small itchy welts on my skin, mainly on shoulders, chest and sometimes face. There were never more than 10 at a time. However, I now take Clarityn to help with this, and after 3 weeks of antihistamine tablets, my welts are more or less completely gone. In terms of anticoagulation, I have been therapeutic all the time (apart from at the start as described but was on heparin then) with an INR of between 2-2.8. Clarityn DOES impact your INR as per my clinics advise and my own experiences; it raises it slightly. This was actually very helpful for me, as taking 1 tablet a day helps keep my INR around 2.5, which also made my clinic happier.
So thats my intro done, I now would like to ask some questions on the recovery process.
**ADVICE ON RECOVERY PLEASE**
I am 2 months and 1 week into recovery. Compared to where I was 2 months ago, I feel much much better. I cannot believe how much of a toll this experience has had on my body.
-My vision was extremely blurry when I came out of hospital. This has improved over time, I am now at about 92% of original vision. I think this will be fine with time as body recovers. I have had this checked out, no one seems to understand why there was a change. Anyone else experience this?
--About 4 weeks into recovery, I started getting the odd feeling of tightness in my chest. This intensified and became more frequent during weeks 6-7, but then completely stopped. I have not yet had this again at all. Was this sensation normal post PE?
-At around week 7, I started experiencing discomfort in breathing. It is not the same as the breathlessness I experienced at the time of the PE, that was real I cant breath properly if I walk, but I do feel mildly breathless at times, especially when walking, and way more conscious of my breathing. I think more laboured breathing is a good way to describe it. Hot and cold temp changes seem to make it worse. Is this normal?
-Do i need to get another heart echo done at any stage?
Thanks for reading this and any advice you can give
IndyH
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
I did not have vision issues. I don't know what that's about. Maybe an effect from low oxygen? You know your body goes through such trauma from something like this that it's hard to say what causes what. If it's getting better, that's fantastic.
As far as any chest pain or breathing issues, that's fairly common during recovery. If you do a search here, you'll see so many threads on that. I will say with breathing, if you're hyper focused on your breathing that can cause you to breath in a really unnatural way. I think after a while you find that when you're not so focused on breathing you won't notice those little breathless moments or labored breathing. And yes, many people say that hot or cold temps affect their lungs post diagnosis. I had that for quite a while actually and even now, years later, super cold weather still bothers me sometimes, not enough to prevent me from exercising outside or anything like that, but just something I'm aware of.
As far as an echo, I suspect if everything looked normal during the first echo , you probably don't need another, but I'd ask your doctor about that.
I would say the first couple of months after my PE were the hardest. By month three I started to really turn a corner feeling pretty good. I was in the hospital for 7 days and you know, that alone can really do a number on you, so you're not only recovering from the PE, but from being out of commission too. So I think what you're feeling is very common.
Most of what you're describing sounds pretty normal for PE recovery. I definitely had chest pains, exhaustion, and SOB (shortness of breath) come and go during recovery. I'd be fine for a while, but if I did something that pushed my recovering lungs too hard (extra activity, heavy breathing while exercising, chemical fumes, outside in extreme heat/cold/humidity) then I would wind up with increasing symptoms for a couple of days. Usually rest helped with that kind of thing and it got less common over time. Still, I had episodes like that up until about 11 months into recovery.
I will say that now, I can go hiking in very cold weather at high altitude and I'll be fine. It doesn't bother me at all. Although I am over four years out from diagnosis at this point.
Still, after being so focused on your breathing, it can be hard to stop paying attention to it all the time. And, of course, being aware of it can make it seem weird and can affect it. It's kind of a vicious cycle.
As for the heart echo, I had very little done with my heart until I developed other complications at about 3-4 months out. At that point, I saw a cardiologist and ran the full battery of tests. They didn't find anything, but he did repeat echos once a year for two more years, just to keep an eye on things. Nothing every came up, but it was nice to be sure that there weren't other problems. I'd talk to your doctor about that and see what he/she suggests.
One other thought on the welts ... it might not be the warfarin at all. It could actually be the fillers and dyes in the pills. I know other people on here who have had a hard time with the dyes in the pink pill, for example. It is possible that you might be able to get rid of the allergy issues by switching pills (taking two 5mg pills, for example, or half of a 20mg) or by switching from generic to brand name. Although, it sounds like you have the situation pretty much under control with the Claritin, so maybe it isn't worth messing with.
RMB - my o2 was 99 upon discharge from hospital. A further check up 4 weeks later again showed 99, so maybe it was just from general exhaustion. Thanks for all of your other points to, they are really helpful.
TossNTurn - Do you mind sharing which other issues you experienced which prompted an echo at 3-4 months?
Regarding the Warfarin, I tried all combinations of pills available to rule out the dye issue. Unfortunately welts occur on the blue, green or brown tablets, regardless of brand. Cheers for the points.
Indy
Once we'd diagnosed the OH (which seems pretty uncommon, BTW, I think more people are affected with higher BP after PEs ... although neither one happen to everyone), my doc sent me for consults with a cardiologist and a pulmonologist. I wound up doing tons of tests on both my heart and lungs. We didn't find any permanent damage from the PEs that resulted in the OH ... and the OH was easily resolved with dietary changes (more liquid, more electrolytes).
My opinion on getting a repeat echo ... if you're not having any acute issues, I don't know that it is worth worrying about. If the docs want it (or you're worried about it), then go for it. But, otherwise, thank your lucky stars that you don't have to have MORE doctor's appointments and go on with life. :-)
I'm a 55 Male, I've had two bouts with PE. #1 was post surgical, #2 (two years later) was due to a blood clot that that let go from my leg into the lungs. #2 was really bad for me. Multiple PE's both sides and one area had an infarct (like a heart attack = "dead tissue"). Your case of Pneumonia and a PE in the same place is huge, I mean HUGE!
Most folks have trouble recovering from pneumonia, a couple of months before they "feel normal". In your case, you need to be really patient with yourself. In my case #2 happened 10/2013, I still feel wiped out, my energy is squat, stairs are a challenge. I could sleep for 10-12 hours If I could.
Part of me thinks it might be because of this bad winter season. I am not a fan winter at all. I still have random weird chest pain. It sounds like I am a basket case, but with each passing week, I do feel just a little bit better. It waxes & wains. And again I think the winter hibernation hasn't done well for me. The thing is, if your symptoms are consistent for more than a couple of days without variation then you need to talk to you MD. We (survivors of PE) have had in one way or another the scared, the OMG whats going to happen to me now kind of feeling, the uncertainty. The scared feelings are all part of the healing process. ..... Very human.
Be patient. I hope it helps.
The first one I was finishing up my BS degree (software engineering). I was hitting the books very heavily and not getting much sleep, in addition to being stressed out. I was about 6 months out from a nervous breakdown (what I call it). I had symptoms for about a week, climbing a flight of stairs would literally tire me out, New Years eve I decided to listen to my wife. My O2 was 90% sitting, walking made it even worse. After the ambulance ride (thankfully no siren) and a VQ scan (the actual gold standard for diagnosing a PE - although a CT scan will also diagnose it), the PE was diagnosed, and I was started on heparin, coumadin, and lovenox shots (prevent further clots from forming). I was in the hospital 4 days. I was good for an afternoon nap and the recovery was slow. I did have an incident where I felt some chest pain in a weird spot - actually in the breast. The cause was what I call a statistical fluke. I have Rheumatoid Arthritis and obstructive sleep apnea, both of which put me at a higher risk for a PE. 6 months of coumadin later the treatment was discontinued.
For the 2nd, I had absolutely zero pre-symptoms. I was stressed out over work, and Monday morning taking the garbage out literally tired me out. The male ego came into play here. After taking the garbage I insisted to my wife that I was fine. Walking into work from the parking lot and taking short walks at work would have the same effect. I called the Dr. at 6:45 AM (wife is an early riser). He didnt think it needed an ambulance, and I made an appointment with my Dr. for around noon. My O2 was 86% walking into his office. By the time the ambulance got there it was back to normal. The Dr. insisted. CT scan showed multiple emboli in each lung, and some sign of infarction. I was in the hospital for 4 days, and returned to work a week later.
I am now on coumadin for life, have my Medic Alert Bracelet, and am having problems stabilizing my INR. 2 weeks ago it was 3.1, and Thursday it was 4.0. I am finding that I have to really work at keeping my vitamin K constant.
That's my story. So what I would conclude is that all PE's are a little bit different.
Mike