Since this was something that was of great interest to me, I want to do my part too by sharing my story for others that may need it as well. I am nearing the month point from when my PE actually hit (3/22/15).
I'll start with my release from the hospital. They let me out after 6 long days, and I was SOOOO ready to go. To be released, I had to prove that I could keep my oxygen SATS up above 90 (because they had been dropping into the 80s every time I would get up), and my heart was still racing to the 130s and 150s too. They expected time and rest to help resolve these issues the most.
When they released me, I was still having to take the Lovenox shots for the rest of that week (5 more days at home). So, I got the fun experience of giving myself shots in my belly TWICE a day for each of those days.
The idea really freaked me out. I wasn't sure if I would be able to really do it, so I told my husband to be prepared to give them to me if I couldn't. He had his own experience with this sort of thing, because after his stroke and diagnosis of diabetes, he had to give himself insulin shots for a while.
I was brave, and was able to give them to myself though. The needle itself did not hurt, but the medicine did. It wasn't even immediate pain. It took about a minute for it really kick in, and then it was doubling me over. I HATED those shots!! In the hospital and out!! Thankfully, I found a spot on my belly that didn't seem to hurt as bad, and I tried to stay close to that.
At the same time as taking the Lovenox shots, I had to take oral meds too. We chose Xarelto over the Coumadin because it kept me from having to have the weekly blood draws. Unfortunately, Xarelto is a lot more expensive though, but with our insurance we still thought it was manageable for us to pay $45 a month for that medicine and NOT have to go to the doc weekly for the blood draws, than to cheap out, and still need to watch my INR levels so closely.
The other thing with Coumadin is that you have to watch what you eat too, because Vitamin K can throw your levels off. The things that I would have to refrain from happen to be some of my favorite foods! Broccoli, cabbage, turnip greens, spinach....ALL THE GREEN VEGGIES!! :( However, with Xarelto, you don't have those same restrictions.
The pills aren't bad; they are small. And honestly, I can't tell any side effects from them at all, other than bleeding a little more from the tiniest cuts, of course.
Because I am on blood thinners now, the doctors told me that I needed to be wearing a medical alert bracelet, so I had my mom make me a beautiful one. She has her own jewelry making business, and is so very talented in coming up with beautiful and personally created designs. (You can check her out at Tazzy's Lanyards and More if you are interested.)
Once I got re-settled at home, it was time for lots of doctor appointments to begin. The first one was with the hematologist. They had run several blood tests for the most common clotting disorders while I was still in the hospital, and he seemed certain one of them was going to come back positive. However, none did.
Everyone seems perplexed over this because I have no risks factors for this to have happened to me. No family history, don't smoke, not overweight, had not been on any long trips, and most shockingly to me--the surgery that I had (septoplasty) was NOT one that should have caused this to happen. Typically they come from surgeries to the legs or abdomen.
My legs were scanned while I was still in the hospital, and they came out clear. I had no leg pain or signs at all to believe that I had developed any DVTs prior to the PE. I didn't just lay around after my surgery, and the surgery itself was a day surgery, so I was out and back home pretty quickly.
So, with all of that, the hematologist just said that I have a case of "unprovoked pulmonary embolism", to which he said that given my age and history, his recommendation is for me to stay on the blood thinners indefinitely...unless and until I do get an answer.
He ran a few more blood tests, but didn't expect them to come back with anything because I didn't have symptoms of those disorders either.
The hardest part of that visit (besides not getting any answers), was that he gave me a copy of my CT Scan report, and reading the findings in writing made it all so real how serious this really was.
Everyone seems perplexed over this because I have no risks factors for this to have happened to me. No family history, don't smoke, not overweight, had not been on any long trips, and most shockingly to me--the surgery that I had (septoplasty) was NOT one that should have caused this to happen. Typically they come from surgeries to the legs or abdomen.
My legs were scanned while I was still in the hospital, and they came out clear. I had no leg pain or signs at all to believe that I had developed any DVTs prior to the PE. I didn't just lay around after my surgery, and the surgery itself was a day surgery, so I was out and back home pretty quickly.
So, with all of that, the hematologist just said that I have a case of "unprovoked pulmonary embolism", to which he said that given my age and history, his recommendation is for me to stay on the blood thinners indefinitely...unless and until I do get an answer.
He ran a few more blood tests, but didn't expect them to come back with anything because I didn't have symptoms of those disorders either.
The hardest part of that visit (besides not getting any answers), was that he gave me a copy of my CT Scan report, and reading the findings in writing made it all so real how serious this really was.
"Mulitple. Bilateral. Several. Large. Arteries completely or nearly filled by the emboli."
It was sobering to say the least.
I've since had a visit with the ENT that did my nose surgery, and also my family doctor. My PCP has referred me off to even more specialists now too. I will be getting a second opinion from a hematologist through Vanderbilt. I have to see a neurologist because I've been having bad myoclonic jerks every night since the PE hit, and we need to make sure it's not seizures, and figure out the best way to treat them so that I can get some sleep. And then to add insult to injury, my PCP found a couple of suspicious looking moles on me during his exam, and he wants me to get seen next week by a dermatologist to rule out skin cancer!
Oh my! I was a mess after that appointment. So much, so fast and I was barely able to handle all that I already was dealing with. I really can't tell you how many times now that I sit and think, "I can't believe this really happened!"
Every time I gave myself a shot or took my pills..."I can't believe this really happened."
Every time I was short of breathe and could feel the heaviness in my chest again..."I can't believe this really happened."
Every time I lay down to sleep and my body starts jerking together every couple of minutes for an hour or more as I try to fall asleep making it REALLY hard to actually fall asleep...."I can't BELIEVE this REALLY happened."
And then, just every time I go to another doctor appointment and have to re-tell the story, it just hits me all over again!
The day I went in to my family doctor for the first time since my diagnosis was very emotional. The last time I had went in was pretty scary for me. I went in thinking I had asthma or bronchitis or something like that, and I was immediately sent to the hospital with a full fledged life-threatening emergency.
My anxiety was through the roof, and my BP and heartrate proved it. The nurse though was so happy to see me. She said that they had checked on me daily while I was at the hospital because they were so worried for me. She said that they KNEW when they were sending me over to the ER that it was PE, but I just really had NO IDEA at all. My DENIAL was STRONG!! :)
I think the hardest part about life after PE is just how little people really know about it. I myself had BARELY even heard of it before, and really didn't know anything. I knew that it was potentially fatal, but I didn't even understand fully what it even was.
What's hard is that so many people (myself included) don't realize how LONG a recovery from PE really is. Since the blood thinners really aren't doing anything to the clots that you already have, they are just preventing new one from forming; you are still left with a lot of the same symptoms that forced you to seek treatment to begin with, like the shortness of breath, chest pain and heaviness, rapid heartrate and low oxygen SATs, and for me these nightly jerks too....as well as a new HUGE ANXIETY over ever clotting again.
With time, the body does re-absorb these clots, and the symptoms will get better, but depending on how much damage was done during the PE, some symptoms may be permanent.
The other thing that I have found hard is how many people comment to me that I "don't look sick". :)
I know that it's meant as a compliment, but it leaves me feeling strange, because I don't know what I'm "supposed" to look like. And it also makes me feel like people may think that because I "don't look sick" that I should be able to do a lot more than I really am able to right now.
I have severe social anxiety anyway, so I'm constantly concerned with what other people think of me (even though I know that I shouldn't be). So to have the extra attention this brings makes me extremely self-conscious right now. I am sure that most people aren't thinking anything negative at all, and are not really even paying attention to what I am or am not doing, but these thoughts are still hard for me to handle some days because I feel like I'm not living up to expectations or something. LOL
As far as what I can do, I'm able to do anything really, but my stamina is what is hit the hardest. I can walk just fine, but if I walk too far or too fast, I get very winded and my heart starts racing. I can do the laundry or sweep floors, but I have to sit down very often. I have been using a chair in the kitchen when I have cooked so I can sit in-between stirring.
I allowed myself to just rest the first week home, but starting with the second week, I gave myself weekly goals of what I wanted to accomplish. The first goal I had was that I needed to get back into the schooling since my children are homeschooled. So, that was my only focus that week. Then the next week, I added in a few loads of laundry. And I will continue with this plan, pushing myself slowly, but a little more each week, until I get mostly back to my regular routine.
I also take a nap every day from about 1-3, and then I'm usually ready to go to bed by 9 p.m. every night. So, basically for now, I'm just resting as much as I can, and not requiring more of myself than absolutely necessary.
Every day I feel a little better, a little stronger, and a little braver. So, I feel like with time I really will get through this. God has continued to be my strength through every single bit of this, and I truly do NOT know how I would have managed without it.
I see life and death so much differently right now too. I'm less scared of death, honestly, because I came to truly realize that I have absolutely NO CONTROL over it. It is a certainty for all of us, and even if I missed it this go round, it does not mean that I am exempt forever. One day, I will die, and I have to be ready for it no matter when it may come. And going through this experience, really made me have to FACE head-on how ready and how confident I REALLY WAS with my eternity. My faith has only gotten stronger, and I am so very thankful for the peace and assurance that only comes from trusting God. And I sure hope that anyone who reads this has that same peace as well.
As I continue this journey, I am sure I will write more, but I think this is enough for today. :)
Here are some other pictures through my PE experience and recovery:
I've since had a visit with the ENT that did my nose surgery, and also my family doctor. My PCP has referred me off to even more specialists now too. I will be getting a second opinion from a hematologist through Vanderbilt. I have to see a neurologist because I've been having bad myoclonic jerks every night since the PE hit, and we need to make sure it's not seizures, and figure out the best way to treat them so that I can get some sleep. And then to add insult to injury, my PCP found a couple of suspicious looking moles on me during his exam, and he wants me to get seen next week by a dermatologist to rule out skin cancer!
Oh my! I was a mess after that appointment. So much, so fast and I was barely able to handle all that I already was dealing with. I really can't tell you how many times now that I sit and think, "I can't believe this really happened!"
Every time I gave myself a shot or took my pills..."I can't believe this really happened."
Every time I was short of breathe and could feel the heaviness in my chest again..."I can't believe this really happened."
Every time I lay down to sleep and my body starts jerking together every couple of minutes for an hour or more as I try to fall asleep making it REALLY hard to actually fall asleep...."I can't BELIEVE this REALLY happened."
And then, just every time I go to another doctor appointment and have to re-tell the story, it just hits me all over again!
The day I went in to my family doctor for the first time since my diagnosis was very emotional. The last time I had went in was pretty scary for me. I went in thinking I had asthma or bronchitis or something like that, and I was immediately sent to the hospital with a full fledged life-threatening emergency.
My anxiety was through the roof, and my BP and heartrate proved it. The nurse though was so happy to see me. She said that they had checked on me daily while I was at the hospital because they were so worried for me. She said that they KNEW when they were sending me over to the ER that it was PE, but I just really had NO IDEA at all. My DENIAL was STRONG!! :)
I think the hardest part about life after PE is just how little people really know about it. I myself had BARELY even heard of it before, and really didn't know anything. I knew that it was potentially fatal, but I didn't even understand fully what it even was.
What's hard is that so many people (myself included) don't realize how LONG a recovery from PE really is. Since the blood thinners really aren't doing anything to the clots that you already have, they are just preventing new one from forming; you are still left with a lot of the same symptoms that forced you to seek treatment to begin with, like the shortness of breath, chest pain and heaviness, rapid heartrate and low oxygen SATs, and for me these nightly jerks too....as well as a new HUGE ANXIETY over ever clotting again.
With time, the body does re-absorb these clots, and the symptoms will get better, but depending on how much damage was done during the PE, some symptoms may be permanent.
The other thing that I have found hard is how many people comment to me that I "don't look sick". :)
I know that it's meant as a compliment, but it leaves me feeling strange, because I don't know what I'm "supposed" to look like. And it also makes me feel like people may think that because I "don't look sick" that I should be able to do a lot more than I really am able to right now.
I have severe social anxiety anyway, so I'm constantly concerned with what other people think of me (even though I know that I shouldn't be). So to have the extra attention this brings makes me extremely self-conscious right now. I am sure that most people aren't thinking anything negative at all, and are not really even paying attention to what I am or am not doing, but these thoughts are still hard for me to handle some days because I feel like I'm not living up to expectations or something. LOL
As far as what I can do, I'm able to do anything really, but my stamina is what is hit the hardest. I can walk just fine, but if I walk too far or too fast, I get very winded and my heart starts racing. I can do the laundry or sweep floors, but I have to sit down very often. I have been using a chair in the kitchen when I have cooked so I can sit in-between stirring.
I allowed myself to just rest the first week home, but starting with the second week, I gave myself weekly goals of what I wanted to accomplish. The first goal I had was that I needed to get back into the schooling since my children are homeschooled. So, that was my only focus that week. Then the next week, I added in a few loads of laundry. And I will continue with this plan, pushing myself slowly, but a little more each week, until I get mostly back to my regular routine.
I also take a nap every day from about 1-3, and then I'm usually ready to go to bed by 9 p.m. every night. So, basically for now, I'm just resting as much as I can, and not requiring more of myself than absolutely necessary.
Every day I feel a little better, a little stronger, and a little braver. So, I feel like with time I really will get through this. God has continued to be my strength through every single bit of this, and I truly do NOT know how I would have managed without it.
I see life and death so much differently right now too. I'm less scared of death, honestly, because I came to truly realize that I have absolutely NO CONTROL over it. It is a certainty for all of us, and even if I missed it this go round, it does not mean that I am exempt forever. One day, I will die, and I have to be ready for it no matter when it may come. And going through this experience, really made me have to FACE head-on how ready and how confident I REALLY WAS with my eternity. My faith has only gotten stronger, and I am so very thankful for the peace and assurance that only comes from trusting God. And I sure hope that anyone who reads this has that same peace as well.
As I continue this journey, I am sure I will write more, but I think this is enough for today. :)
Here are some other pictures through my PE experience and recovery:
This girl was 2 days post PE, and didn't even know it yet.
The ER was so busy the night I went in that they had to put me in a pediatric room. :)
At the hospital, and truly just happy to be alive.
A special homecoming snuggle!!
The face of a Pulmonary Embolism Survivor!
I heard this song playing while I was in the hospital and it stopped me in my tracks, I felt every single word came right out of my own heart. <3
I heard this song playing while I was in the hospital and it stopped me in my tracks, I felt every single word came right out of my own heart. <3
