Anyone ever had a pulmonary embolism?

[Meeko5]

I got home from the hospital yesterday after being diagnosed with and treated for a PE. Well, several small PE's in my right lung. I've read lots of articles, personal stories on the internet about recovery time and expectations, but I'm wondering if anyone here has any personal information they would be willing to share.

I know it's technically safe for me to return to normal activities, but it's still pretty hard. Walking down steps, or moderate distances still leave me winded and with some chest discomfort. My 2-3 daily bike rides around the neighborhood with my kids is definitely not happening anytime soon. Laying down flat to sleep increases the chest pain and shortness of breath as well. I keep reading time is the answer, but am already worried that I'm still going to have these issues for our upcoming WDW trip in just over 3 months. I've got my follow up with my PCP next week and will obviously discuss with her, but am hoping to hear some promising stories of quick recoveries instead of some of the more depressing long recovery ones I'm finding on other forums :/

 

[Dan Murphy]

I have no personal experience, Meeko, but sure am wishing you well. 's

You might also run the question past folks on the disABILITIES board. And a suggestion to maybe look into renting an ECV for your Disney trip if you are not fully up to par at that time.

http://www.disboards.com/forums/disabilities.20/

 

[King Schultz]

I got home from the hospital yesterday after being diagnosed with and treated for a PE. Well, several small PE's in my right lung. I've read lots of articles, personal stories on the internet about recovery time and expectations, but I'm wondering if anyone here has any personal information they would be willing to share.

I know it's technically safe for me to return to normal activities, but it's still pretty hard. Walking down steps, or moderate distances still leave me winded and with some chest discomfort. My 2-3 daily bike rides around the neighborhood with my kids is definitely not happening anytime soon. Laying down flat to sleep increases the chest pain and shortness of breath as well. I keep reading time is the answer, but am already worried that I'm still going to have these issues for our upcoming WDW trip in just over 3 months. I've got my follow up with my PCP next week and will obviously discuss with her, but am hoping to hear some promising stories of quick recoveries instead of some of the more depressing long recovery ones I'm finding on other forums :/

No advice either, but I'm sorry you're dealing with this and I hope you feel better soon.


Work with your doctors, take it a day at time, and rest when you need to.

 

[bushdianee]

I was diagnosed with multiple small clots in both lungs in March. I spent 8 nights in post intensive care (step down unit in some areas) on heparin and blood thinners until my INR levels regulated. I was given the choice of warfarin or one of the newer drugs. I chose the warfarin even though it means more blood tests because I was familiar with it as my mom had been on it and the possible cost of the newer meds. They ran tests to see if the clots were caused by a genetic reason. Since those tests came back negative they assume the clots were from the leg I had fractured in January. I am supposed to be on the blood thinners for 6 months since no genetic cause was found. I also have COPD so my shortness of breath may be caused by that although I don't seem to be as short of breath as I was before the PEs. The pulmonary dr said that could also be because I had lost about 30 pounds being in the hospital 2x and a skilled nursing facility for 2 1/2 months, so that was postponed for about 2 weeks. The PEs were found a week before I was supposed to go home from the skilled nursing. I can't give you an accurate recovery period as I am still recovering from the fractured tibia as well as the PEs. It also sounds like I am quite a bit older than you (58)if you have little ones.

 

[King Schultz]

I was diagnosed with multiple small clots in both lungs in March. I spent 8 nights in post intensive care (step down unit in some areas) on heparin and blood thinners until my INR levels regulated. I was given the choice of warfarin or one of the newer drugs. I chose the warfarin even though it means more blood tests because I was familiar with it as my mom had been on it and the possible cost of the newer meds. They ran tests to see if the clots were caused by a genetic reason. Since those tests came back negative they assume the clots were from the leg I had fractured in January. I am supposed to be on the blood thinners for 6 months since no genetic cause was found. I also have COPD so my shortness of breath may be caused by that although I don't seem to be as short of breath as I was before the PEs. The pulmonary dr said that could also be because I had lost about 30 pounds being in the hospital 2x and a skilled nursing facility for 2 1/2 months, so that was postponed for about 2 weeks. The PEs were found a week before I was supposed to go home from the skilled nursing. I can't give you an accurate recovery period as I am still recovering from the fractured tibia as well as the PEs. It also sounds like I am quite a bit older than you (58)if you have little ones.

My goodness!! I'm so sorry you're dealing with all that.

((((hugs)))) I hope you feel better soon.

 

[bushdianee]

My goodness!! I'm so sorry you're dealing with all that.

((((hugs)))) I hope you feel better soon.

Thank you. It was a scary time and several doctors have told me I'm lucky to be alive. they believe that there had been 1 or more larger clots that broke up before they went through the heart as there was no heart damage. They also said that the fact that the clots settled in the lower lobes saved my life. I am healing very slowly but making steady progress. I had to take early retirement because I have been off work since January 11 and am still not ready to return to teaching full time.
To the OP, the suggestion of an ECV is a good one. I used one on my last 2 trips to WDW before the PEs due to the COPD. You can rent one off site for a reasonable cost. If you are having a good day you can always park it and walk around that area for a while, but have it if you get tired or short of breath. I know I don't have much stamina now but it is improving as I push myself to do more. Just trust your instincts about what you can and can't do. Check with your doctors about the trip and any precautions you might need to take. I recently took a trip to my hometown for my high school reunion. The drs. told me it was ok as long as I flew and didn't drive as it was about 1100 miles each way. I got help in the airports as well which was a big help.

 

[Mrs. Ciz]

I got home from the hospital yesterday after being diagnosed with and treated for a PE. Well, several small PE's in my right lung. I've read lots of articles, personal stories on the internet about recovery time and expectations, but I'm wondering if anyone here has any personal information they would be willing to share.

I know it's technically safe for me to return to normal activities, but it's still pretty hard. Walking down steps, or moderate distances still leave me winded and with some chest discomfort. My 2-3 daily bike rides around the neighborhood with my kids is definitely not happening anytime soon. Laying down flat to sleep increases the chest pain and shortness of breath as well. I keep reading time is the answer, but am already worried that I'm still going to have these issues for our upcoming WDW trip in just over 3 months. I've got my follow up with my PCP next week and will obviously discuss with her, but am hoping to hear some promising stories of quick recoveries instead of some of the more depressing long recovery ones I'm finding on other forums :/

I was diagnosed with multiple small clots in both lungs in March. I spent 8 nights in post intensive care (step down unit in some areas) on heparin and blood thinners until my INR levels regulated. I was given the choice of warfarin or one of the newer drugs. I chose the warfarin even though it means more blood tests because I was familiar with it as my mom had been on it and the possible cost of the newer meds. They ran tests to see if the clots were caused by a genetic reason. Since those tests came back negative they assume the clots were from the leg I had fractured in January. I am supposed to be on the blood thinners for 6 months since no genetic cause was found. I also have COPD so my shortness of breath may be caused by that although I don't seem to be as short of breath as I was before the PEs. The pulmonary dr said that could also be because I had lost about 30 pounds being in the hospital 2x and a skilled nursing facility for 2 1/2 months, so that was postponed for about 2 weeks. The PEs were found a week before I was supposed to go home from the skilled nursing. I can't give you an accurate recovery period as I am still recovering from the fractured tibia as well as the PEs. It also sounds like I am quite a bit older than you (58)if you have little ones.

Meeko and bushdianee, I wish you both complete recoveries!!!!! I hope your loved ones are taking good care of you and that you mend quickly.

 

[King Schultz]

Another vote for using an ECV if needed.

That's what they're for.

 

[indygirl99]

I got home from the hospital yesterday after being diagnosed with and treated for a PE. Well, several small PE's in my right lung. I've read lots of articles, personal stories on the internet about recovery time and expectations, but I'm wondering if anyone here has any personal information they would be willing to share.

I know it's technically safe for me to return to normal activities, but it's still pretty hard. Walking down steps, or moderate distances still leave me winded and with some chest discomfort. My 2-3 daily bike rides around the neighborhood with my kids is definitely not happening anytime soon. Laying down flat to sleep increases the chest pain and shortness of breath as well. I keep reading time is the answer, but am already worried that I'm still going to have these issues for our upcoming WDW trip in just over 3 months. I've got my follow up with my PCP next week and will obviously discuss with her, but am hoping to hear some promising stories of quick recoveries instead of some of the more depressing long recovery ones I'm finding on other forums :/

I would rent an ECV for your Disney trip.

Expect it to take upwards of 6 months to get back to normal. A lot of people never get back fully to where they were before their PE.
The fact that you are younger is on your side.

Take care of yourself and don't push to hard. Let others help you until you are back on your feet. And enjoy yourself at Disney.

 

[phorsenuf]

I had a PE about 5 years ago. I was living alone at the time as my husband was working overseas. It was one of those weird things that your body just knows something was wrong so I went off to the ER. It was just dumb luck (again) that my Dr ran a D-Dimer test in the ER, which then led to the CT scan, which then led to a 5 day stay in the hospital over Thanksgiving.
For me, it was a long recovery but I deal with other health issues. I ended up being on warfarin for about a year. Unfortunately since the episode I've had ongoing lung and breathing problems. I was just recently diagnosed with sarcoidosis so now I worry that I won't know for sure if I have issues again what it may be from. I've also had the hat trick of clots. Lungs, heart attack and mild stroke. ;-)

I think the hardest part for me to deal with was the worry and anxiety of it happening again. They still aren't 100% sure why it happened but about 2 weeks prior I had just completed a long drive from NH to FL. I didn't have any signs or indications though of a blood clot in my leg, but they are assuming that's what happened. My advice is just take it slow. Don't push yourself and do things on your time, not based on other people's experiences, or even what the Drs expect. Everyone is different and every body is different in ways of healing. I think it was easier to physically recover from it then it was mentally.

I would definitely rent a scooter for your trip. Check out K&M Rentals on Irlo Bronson in Kissimmee. They have fantastic rates and are very friendly (we just bought a used scooter from them yesterday). Take plenty of breaks and stay hydrated. Do not push yourself.

Best wishes on a complete and speedy recovery!

 

[MIGrandma]

I'll share my story - it was Labor Day of 2003, we had just gotten home from a long weekend of camping with friends and I was unloading the camper and taking things into the house. I had a bag of things in my arms when I came down the camper steps and my father-in-law drove in the driveway so I was standing by his car chatting with him when all of a sudden I couldn't catch my breath. I couldn't walk from the family room to the bathroom without breathing hard. The next day I went to the doctor and she couldn't find anything wrong, said if I was still having problems on Friday to give her a call. I actually went to a Dwight Yoakam concert on Wednesday night at our local casino. I had a hard time breathing while walking into the venue but since I didn't know I had a pulmonary embolism at that time I went ahead and went to the concert. Friday the doctor sent me for a CT scan. After the scan they said to go home and if anything was wrong they would call. I went home and was actually dressed and ready to go to work (I was a waitress) when I got the call to get back to the hospital immediately. They didn't even have me fill out the normal admitting paperwork, just whisked me away and got me started on a heparin drip. I spent 4 days in the hospital, with the heparin drip, and having blood drawn every 6 hours. I had blood clots in both of my lungs and they said I was lucky to be alive.

I was on warfarin for a year after that. It was also discovered at that time that I had Type 2 Diabetes so it was a double whammy. I started walking, and could hardly walk and breathe at the same time but I thought that was from being overweight and out of shape, never really thought about it being an after effect from the blood clots. But I kept walking, and walking and walking. I was walking 2-5 miles per day, 5 days a week. I lost 30 pounds and felt great.

Then, in February 2012 I had another blood clot. This time it was in my left arm. We had gone on a cruise with my Mom and a friend, and we had a 10-hour layover in the airport. We did a lot of sitting. I would get up every couple hours or so and take a nice, long walk around the airport. But. When I was sitting I was resting my arms on the arms of the chair, and mostly resting on my left arm. And on the plane coming home I sat between my Mom and our friend and our friend is a BIG girl, so I was leaning over towards my Mom a lot and resting that left arm on the arm of the seat. After we got home, the following night I noticed a tender spot on the inside of my left arm, just above the elbow. It was warm to the touch and I just had "a feeling" about it so called my doctor's office. The doctor on call said it probably wasn't a blood clot but told me to go to the emergency room anyway. I went, and they did a scan and the emergency room doctor also said it probably was not a blood clot. But it was. By now it was 4:00 in the morning, so they admitted me and started me on heparin. My doctor came in at 9:00 and said I could go home and just go back on the warfarin.

I've been on warfarin ever since. I've never had the test to find out if I'm genetically prone to blood clots though. If I had the test and it was negative I would still worry if I went off the warfarin that it could happen again. I don't really like going in for blood work once a month, and sometimes more often if the level is too low/high. But it's something I just have to do. I've thought about getting my own testing machine like the doctor's office has (it just requires a drop of blood from my finger, rather than a full blood draw) but they are over $400 and then I'd have to buy the test strips too so just keep going to the doctor's office to have it checked. They want it between 2 and 3, normally it is right in there somewhere, but last week it was 3.2 so have to go back to have it checked Monday. If it's okay then it will be 2 weeks, if that's okay then it'll be back to monthly. Once a month I don't mind so much, but when it's more often it does get a bit annoying. I haven't wanted to try any of the newer medications like Eliquis and I can't think of the other one...because of the side effects, and more costly.

Oh, the reason my doctor didn't get alarmed right away when I had the first blood clot in my leg (left leg, just above the knee on the inside) was because I am a waitress and on my feet all the time. Really have no idea how that one formed, as I hadn't been ill and in bed a lot, hadn't had a long plane ride, etc.

But, there's my story. I know it's a scary thing to go through.

 

[Meeko5]

thanks everyone for sharing your stories and advice - I will definitely keep an ECV in mind if I'm not back to normal by the time of our trip. I hadn't even considered that! I can already imagine the judgy looks I would get for that since I am young and fit haha

I definitely agree that recovering mentally is going to be just as hard as physically, because the constant worry of will I develop more clots, how long will it take to feel better, etc. is constantly gnawing at me and it's been less than a week since onset of symptoms. Ugh.

I didn't have a DVT that caused it, at least not that we know of. I did start taking birth control 2 months ago and so for now that is the only cause. I'm only 33, in great shape physically, very active, and have never been a smoker. All my genetic testing for clotting disorders has been negative so far. No family history of clots either. It just feels so weird to have had such a serious issue. My kids don't really understand why I cant take them outside to play, or for bike rides, etc because I look perfectly healthy. My 66 year old father in law and I are now on the same blood thinner - never thought I'd have ANYTHING in common with him

 

[lsyorke]

2 years ago after driving to Disney Hilton Head I started having shortness of breath on exertion. Didn't think to much of it, blamed the humidity. Finally got so bad we left and drove home. Surprisingly it improved once home..for 3 days. Ended up in the ER. Bilateral pulmonary emboli, DVT left leg(no symptoms of a DVT at all). Spent 2 days in the hospital on Lovenox and came home on Xeralto. Initially I was on Xeralto for 3 months and then switched to aspirin(no genetic cause of the clots). After being on Aspirin for 2 months had an episode of shortness of breath and tachycardia(no clot found). It was then that my cardiologist, after talking with another doctor who is an expert on PE, decided that xeralto for life was the safest option. The old way of thinking was if it happened after an outside source, or provoked(long car ride) short term treatment was fine. It's no longer believed that this is fact and long term, possible life treatment, is the best option.
I'm lucky to have insurance that covers Xeralto(with Jansens zero copay program I pay nothing)and it's had minimal side effect of heartburn for me.

This is scary stuff. As a Nurse I understood how lucky I was. It truly changes your life. 2 years out I still get occasional shortness of breath, but it passes on it's own. No further blood clots since the initial episode.

They psychological stuff does improve with time, but I hear what your saying. I remember not sleeping for a a few months immediately after and wondering if life would ever be carefree again. It gets there, but it takes time.

 

[Meeko5]

2 years ago after driving to Disney Hilton Head I started having shortness of breath on exertion. Didn't think to much of it, blamed the humidity. Finally got so bad we left and drove home. Surprisingly it improved once home..for 3 days. Ended up in the ER. Bilateral pulmonary emboli, DVT left leg(no symptoms of a DVT at all). Spent 2 days in the hospital on Lovenox and came home on Xeralto. Initially I was on Xeralto for 3 months and then switched to aspirin(no genetic cause of the clots). After being on Aspirin for 2 months had an episode of shortness of breath and tachycardia(no clot found). It was then that my cardiologist, after talking with another doctor who is an expert on PE, decided that xeralto for life was the safest option. The old way of thinking was if it happened after an outside source, or provoked(long car ride) short term treatment was fine. It's no longer believed that this is fact and long term, possible life treatment, is the best option.
I'm lucky to have insurance that covers Xeralto(with Jansens zero copay program I pay nothing)and it's had minimal side effect of heartburn for me.

This is scary stuff. As a Nurse I understood how lucky I was. It truly changes your life. 2 years out I still get occasional shortness of breath, but it passes on it's own. No further blood clots since the initial episode.

I'm an RN as well, it's so weird being in this place - I spent 2.5 days going "ok this is not right, but why would I have a PE?! Surely its something else" before calling my doctor. Nurses make the worst patients

I too am getting my coapy for Xarelto covered by that program. So nice!

 

[lsyorke]

We are absolutely the worst. Do what you need to do to get through this time period. No thought is to crazy, believe me I had them all. I had 3 venous dopplers done in the first 4 months after the PE..that of course were totally normal.

 

[jvz82]

My husband had a pulmonary embolism at age 27. It was completely random and he's never had one since that time (12 years ago just about). He does have a heart condition but pulmonary embolisms are not at all related to it so there didn't seem to be any connection. He took blood thinners for several months until it ended up making his heart condition worse and started seeing a new specialist who took him off the blood thinners. He's never had any clotting issues since then. I don't remember him being all that physically hindered after being treated for the embolism, it didn't take long before he was back to his normal self. Although he's never been overly active because of his heart condition.

I had a cousin-in-law who had blood clots that they determined was from birth control pills. She was told she could never be on them again and she's never had any issues since, and that was several years ago.

 

[Disney Doll]

I was 26 when I had my PE. I'm a nurse. I had just gotten back from a trip to the Bahamas, so a plane ride but only 2-3 hours, so not inordinately long. I had had heart surgery as a child (age 7) for an atrial septal defect. I had been taking BCPs for a few months. MDs surmised it was the BCPs although I had a few things that could have "possibly" contributed to a clot forming (plane ride, on my feet a lot as an RN, repaired heart defect with scar tissue where a little weird clot could have formed). According to the MD at the time the clotted area was like a "medium sized bunch of grapes" in my right lung. I had actually been feeling a weird pain in my right side for about 3 weeks which I attributed to my gallbladder because it seemed to happen every time I ate greasy fatty food. Came to find out it was probably the initial clot forming then other clots "getting stuck" on the initial clot to make the "bunch of grapes" analogy. The crushing chest pain and shortness of breath in the middle of the night one night when the thing got big enough to create a problem FINALLY made my nurse brain think that I might have a bigger issue than gallstones.

I was in the hospital for a week on a Heparin drip weaned off to Coumadin. Stayed out of work for 3 weeks and then felt OK to go back. I was a staff nurse on a medical floor so not an easy job...pretty busy and physical.

I was on the Coumadin for about 8-12 months...hard to remember because it's been almost 30 years! Didn't really have any major issues after that and never had another PE problem. Honestly, I never gave it any thought at the time that it could happen again...probably stupid on my part but it just never crossed my mind. I figured it was a fluke thing.

I don't really feel any residual breathing issues. I've done 1/2 and full marathons (walking, not running) without difficulty. Have done absolutely normal activity...yard work, snow shoveling etc. Every once in a while if it's REAL humid I'll feel my breath "catch" when I go outside but that's about it, and that could really just be because of the humidity rather than any "residual" PE stuff. In my late 40's I had a TIA (mini stroke) which they attributed to the heart surgery repair having sprung a little "leak" after 40 years. I take a baby aspirin now and haven't had any more problems. But in the work-up for the TIA they did chest CT scans (to look at the heart repair) etc. and mention some scarring on my right lung as an incidental finding which, when I tell them I had a PE on that side, everybody says "Oh it's probably some scar tissue from that" so there must be something there although it doesn't really impact me.

Good luck to you. I hope you feel better. If you have any questions, feel free to ask. I'll do my best to answer.

 

[scrhsa]

Coming up on two yrs ago my husband started complaining that his side was hurting and he hurt to breathe on that side. We thought it was a strain from moving the dryer. Nope. He came in at about 10 pm and said we're going to the ER right then. I think he had two on his left side and about 3 on his right side. Scared the bejeebies out of us. He was in the ICU for about 3 days. About 4 days after he got home he decided that he needed to go to a high school football game 1/12 hr away.Goofy man!!! He was on a blood thinner for awhile (common one I cant remember the name) but now they just have him taking baby aspirin. He is fine now. Doing all that he did before.