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, first a shout out to Dragon for letting me know about this group. She was one of the customers in the yarn shop that I sell yarns on the day that one of the employees saw that I was in the hospital with PE.
So crappy year 2011, parents had cancer, I had pneumonia all dx'd within 8 weeks. I now have asthma after the pneumonia. There's a bunch of other health issues for me as well, that don't help.
So the week before the PE, I got sick with flu, Monday was seen by GP since the asthma thing doesn't make it better. He confirmed flu and added bronchitis and put me on Levaquin.....which has tendon side effects. Tuesday afternoon I was having significant calf pain, and saw GP again on Wednesday. He changed my antiBiotic and did a cursory DVT check, but I had only the pain and no swelling, no redness.
Friday, I was due to RTW on Monday, called boss who told me I did not sound better and I needed to know what was going on with my leg, because the not-walking thing is kind of a problem. So I called drs back, after hours at this point.....yes you should be assessed for DVT, they pulled me into Mior Injury clinic, because they are the bone/muscle guys. That appt went like this:
Doc: what's going on
Me: Calf pain, no reason for it, feels like charley horse from hell.
Doc: anytime someone presents with inexplicable calf pain, we check them for DVT and PE, you're going to the ER and here's your wheelchair.
So off to ER: ultrasound-no DVT, unremarkable Xray, Ddimer 2600+ and several PE on the CT scan.....they started me on Lovenox and waited for a hospital bed for me, which I finally got. I wound up being in the ER longer than the hospital.....but they sent me home. I was in constant contact with the Coumadin clinic for the next 2 weeks.....tracks and bruises on my arms due to the sticks, standard stuff.
2 weeks at home with this, going up the walls because I've already been on leave for 3 weeks between being sick and family.....
Saw my GP 5 days after discharge, (actually he called me the Monday after hospital and was like WTF, how do you have PE, you have no risk factors, which was reassuring in a way) he referred to Pulmonologist who was more concerned about the asthma, although he talked about the PE.....GP was the one that basically told me that my left lung was riddled with emboli....which is scary.
And recently found out the ER doc cancelled my albuterol because it does not help with PE, completely ignoring that it's critical for asthma. Talked to my GP yesterday and he re-prescribed and also told me there would be a lot of mental and physical fatigue in this recovery. I did not mention the dizziness, the feeling wobbly on my feet most of the time, the trembling is from the albuterol I am sure.
And, you know, there's nothing on the web about recovery, and what that looks like except that lwelch page. There's nothing about if you have both asthma and PE, except a study about comorbidity.
Meanwhile, I am trying to see if I am getting better, but the only measurements I have at the moment are my asthma ones and the little pocket pulse oximeter.
Without the milestones, how have people measured their progress on recovery? Has everyone been out of their jobs for the duration of the recovery? Are there people that have gotten better in short timeframes instead of the stories I see about it took my 3 years to get better, but I never really did? Because those stories are really scary and I really need some hope that things will get better, that I will be strong again in less than a year. cause frankly, I am 41, both parents had cancer last year and into this year. I take more medications that both of them combined. That's just wrong.
So crappy year 2011, parents had cancer, I had pneumonia all dx'd within 8 weeks. I now have asthma after the pneumonia. There's a bunch of other health issues for me as well, that don't help.
So the week before the PE, I got sick with flu, Monday was seen by GP since the asthma thing doesn't make it better. He confirmed flu and added bronchitis and put me on Levaquin.....which has tendon side effects. Tuesday afternoon I was having significant calf pain, and saw GP again on Wednesday. He changed my antiBiotic and did a cursory DVT check, but I had only the pain and no swelling, no redness.
Friday, I was due to RTW on Monday, called boss who told me I did not sound better and I needed to know what was going on with my leg, because the not-walking thing is kind of a problem. So I called drs back, after hours at this point.....yes you should be assessed for DVT, they pulled me into Mior Injury clinic, because they are the bone/muscle guys. That appt went like this:
Doc: what's going on
Me: Calf pain, no reason for it, feels like charley horse from hell.
Doc: anytime someone presents with inexplicable calf pain, we check them for DVT and PE, you're going to the ER and here's your wheelchair.
So off to ER: ultrasound-no DVT, unremarkable Xray, Ddimer 2600+ and several PE on the CT scan.....they started me on Lovenox and waited for a hospital bed for me, which I finally got. I wound up being in the ER longer than the hospital.....but they sent me home. I was in constant contact with the Coumadin clinic for the next 2 weeks.....tracks and bruises on my arms due to the sticks, standard stuff.
2 weeks at home with this, going up the walls because I've already been on leave for 3 weeks between being sick and family.....
Saw my GP 5 days after discharge, (actually he called me the Monday after hospital and was like WTF, how do you have PE, you have no risk factors, which was reassuring in a way) he referred to Pulmonologist who was more concerned about the asthma, although he talked about the PE.....GP was the one that basically told me that my left lung was riddled with emboli....which is scary.
And recently found out the ER doc cancelled my albuterol because it does not help with PE, completely ignoring that it's critical for asthma. Talked to my GP yesterday and he re-prescribed and also told me there would be a lot of mental and physical fatigue in this recovery. I did not mention the dizziness, the feeling wobbly on my feet most of the time, the trembling is from the albuterol I am sure.
And, you know, there's nothing on the web about recovery, and what that looks like except that lwelch page. There's nothing about if you have both asthma and PE, except a study about comorbidity.
Meanwhile, I am trying to see if I am getting better, but the only measurements I have at the moment are my asthma ones and the little pocket pulse oximeter.
Without the milestones, how have people measured their progress on recovery? Has everyone been out of their jobs for the duration of the recovery? Are there people that have gotten better in short timeframes instead of the stories I see about it took my 3 years to get better, but I never really did? Because those stories are really scary and I really need some hope that things will get better, that I will be strong again in less than a year. cause frankly, I am 41, both parents had cancer last year and into this year. I take more medications that both of them combined. That's just wrong.
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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.
Well, that fact that you're doc told you there would be a lot of mental and physical fatigue in this recovery is probably more information than most of us get, post PE. So that's a start.
I was 42 I think when I had my PE. I started feeling pretty good about 2 months post PE and I felt what I'd say is pretty normal 3-4 months post PE. I went back to work full time two weeks after my PEs. I have no residual effects from my PE except cold and humid weather irritate my lungs, and sometimes, I can't hold a song note real long when singing in the car. But all and all, I am good. I still do all the things I did before the PE.
Everyone is different with their recovery, but you do not have to resign yourself to an endless, awful recovery. It's not always easy and there are days where it's one step forward, two steps back, but you just try to take it all a day at a time, you know.
It's not like every person who ever had a PE posts here so it's not like your getting every person's experience who ever had a PE. So hang in there.
First----- you've certainly had more than your share of problems recently but 'reaching out' will give you an idea of the width and breadth of how everyone responds differently.
You're right---- some get on with their life fairly quickly. Some take a lot longer. Let's hope for the first outcome since you're young and except for asthma no other health problems.
Have you been tested for the common genetic tests? I'm sure Dragon can fill you in on those.
A side note about Levequin (and it's evil sister Cipro)------ I had to be on them for a tick borne disease and although I didn't get the tendon problems in my Achilles tendon area----I got pain throughout my body that started then and is still there. No wonder there are so many class action suits against those quinolones!
Good luck to you and fingers crossed.
I've got asthma too (pretty mild, just Qvar once a day keeps it under control) and my asthma doc (who is the one who sent me to the ER to be checked for PEs) told me that now I have two lung issues: asthma and PEs. Overall, though, at this point (I'm more than two years out), I'd say I'm back to normal except that I'm in bad physical shape. That's my own fault though cause I work from home and just don't get out to exercise much.
I had my PE diagnosis when I was 35. We're not sure what caused it because I had no risk factors at the time. I had two prior DVTs (2005 and 2009) though, so I'm a warfarin lifer now.
I went back to work four days after getting out of the hospital. I was in the hospital less than 24 hours, I guess because I'm a Lovenox pro and they were totally fine sending me home on it. Recovery was easy for about a month. The SOB (shortness of breath) went away in a week or so. The worst part of recovery was the anxiety and fear, which followed me everywhere for months.
Otherwise, when I started pushing too hard at about five weeks out, I developed more SOB and some minor pain. A repeat CT showed that my clots were gone, but I had just been pushing my poor struggling lungs too hard. Probably was another seven months before I stopped having exhaustion after pushing too hard.
Hard to say exactly how recovery will be for you. We've all got different issues and weird combinations of other medical issues/meds and different lives and so on. Expect exhaustion and anxiety. Other than that, I think most of us wind up recovering a little bit differently.
Glad you found us though! This forum was a godsend during my recovery! Keep us posted on how you are doing!
yeah, the flouro/quinolones can be nasty.....I was sure that the leg pain was imminent tendon rupture, but the DO I saw for 20 seconds before the ER referral felt that I had not taken enough doses to go there. But they took care of my pneumonia last year, so that's good. But I thought it was immensely funny that they treated my pneumonia with anti-anthrax drugs.
And you're right, I was trying to find the kind of normal stories to reassure and provide hope.
Good news in all of this, I have just put in for vacation for the next 5 Fridays, which should help with the recovery a bit.
Yeah, right! Not on Lev long enough!
Bull puckey, as that guy on Mash always said! Me (and dozens of others) got the symptoms within a few days.
I hope you can find messages of hope mixed in with the real life experiences here.
I understand the good and bad days. People want to know when you will be back to work. When I'm sitting, I'm fine. It gets upsetting when doing something normal like walking a flight of stairs, putting laundry away, making something for lunch makes you short of breath.
I see hemeonc at 0930 to get my next game plan, and see my internal med doc friday. I just want the greenfield filter in so I can get back to work in the ER.
It takes a lot of work to sit and do nothing. Let me know if you need to talk. :)
I was out of work for three weeks post-diagnosis, went back into the hospital due to low INRs, and then was out for another month after that. Frankly, I should have taken more time off. A third month.
As it is, I'm working from home as much as possible but also trying to build stamina by going into my office in the city a few days a week.
I'm not tired *all* the time anymore (3 months out from diagnosis), but it can get overwhelming. I melted down outside of Safeway last week, for instance. (So embarrassing. I may have to find a new Safeway!)
I'm charting my progress by how I feel internally. It's the only thing I can really check, since I only get my INR checked once a week.
It'll get better. Everyone takes their own time frame, but it'll work out.
Dragonsp, I am working from home 2 days and dragging myself into the city two days....next 5 fridays are vacation days, since I am out of sick days. How much more can we have in common??
I don't melt down so much as just need to lay down really really quickly. It alwasys takes my by surprise.
I am pretty worried at the moment, I am coming up on my period, and I think it's going to be a bad one.....I have severe PMDD and usually manage it with some drugs (which I am maxed on at the moment) and good heavy swims that week, so that body is too tired to do the whole thing.....well, can't do the swims, can't up the drugs, and I have put on 5 pounds in the last 3 days.....it's looking to be pretty bad.
Stock up on the chocolate and ice cream, warn the neighbors to stay away, and lock yourself in the house for a few days.
Hang in there!
I have PMDD too. It all started a couple of years ago. Never had any period /PMS issues in my life until then. Perimenopause has changed everything having to do with my cycle, that, and no longer being on hormonal birth control since the PE.
Try to no psyche yourself out about the period. Just do things that you know sooth you. Warm bath, heating pad, tea, meditation, whatever works. This too shall pass.
Note! this is just a fast run-through and I don't know if it's complete or not.
Here is what Cleveland Clinic says about genetic tests for PE
Inherited hypercoagulable conditions
Acquired hypercoagulable conditions
And much more.
http://my.clevelandclinic.org/heart/disorders/vascular/hypercoagstate.aspx
This site will get you started on figuring out what genetic tests you might want/need.
I didn't see mention of which ones can be done while on warfarin but I might have missed it.
I have been one of the slower healers because I stayed pretty fatigued until just about the time I hit my one-year anniversary. I took a three-month leave from work and worked part-time for several months after that. (I was recovering from a dislocated knee at the same time--that injury led to my PEs--and going to physical therapy several times a week..)
I have measured my recovery by acknowledging the little victories along the way. And some of my victories were really little things like "washed my hair for the first time since being in the hospital--didn't have the strength to do it before now" or "I'm free--I drove myself to the post office!" I posted them on my Facebook page and still look back periodically just to see how far I've come.
I'm 51 and I didn't like having to give up an entire year to recover from this. Of course, I very nearly didn't survive my PEs so I'm fortunate that I was here to go through this long recovery!
I finally accepted that I wasn't going to be physically active for quite some time so I decided that I would have a very active inner life instead. I spent a lot of time doing things that I normally wouldn't take the time to do--meditating, pondering, planning, daydreaming. That part of the last year has been really enjoyable!
This recovery has definitely been challenging but it does get better. Heck, this time last year I was using a walker to get around my house because I was so weak and exhausted! Now I walk about two miles a day without needing any assistance.