Life after Pulmonary Embolism (PE)

In the days that followed my diagnosis, I scoured the internet to find out what did this news mean for me?  It was clear that for many people (1 out of every 3), PE meant death (and for 1 in every 4 INSTANT death!), but what about the other 2/3's.  Did life resume as normal?  How serious was this diagnosis if you actually survived long enough to get the diagnosis?

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.

 

"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:

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

The night I could have died...

Boy, has this been quite a memorable week for my family.  My family has BEEN through stuff.  I have two kids who were hospitalized a week each with asthma issues, and my husband had a stroke at 30 years old.  Yes, some big, scary moments!!  Ones I would not wish on any other person!!

Well, this week was centered around me.

A week ago today, Sunday, March 22, 2015, I had a pulmonary embolism...and I'm still here to tell about it.  Praise the Lord for His mercy.


How in the world does a fairly healthy 35 year old stay-at-home mom end up in such a life-threatening situation?

The answers are still lingering.  One thing we know, is that I had had nasal surgery (septoplasty and turbinate reduction) five days before.  I was doing well through it though.  I still had nose splints in, and could not breathe at all through my nose, but I was doing well for the point I was post surgery.

In fact, that day I felt well enough that I decided to go to church.  It was my first outing since the surgery.  I was still easily exhausted, but I really did feel like I was on the downhill swing from this thing.  That I had conquered the worst, and made it through.

You just don't know, what you just don't know though.

That night I went to bed, was still sleeping reclined as I had been instructed.  It took me a long time to fall asleep, as usual, but at some point, I obviously had.  Because in an INSTANT, I was jolted wide awake because my lungs had just completely stopped.

I sat up trying to gasp, breathe, anything, and I wasn't able to get any air at all.  It was like someone had taken plastic wrap and covered my airway.  Also, at the very moment I was jolted, I remember this very distinct sound and feeling of "whoosh" that went with it, that was part of what jolted me alert.

After several seconds (that seemed much longer), I finally got a cough to come out, and then coughed like crazy trying to catch my breathe.  The adrenaline was definitely pumping, and my brain was on overdrive trying to decide "WHAT JUST HAPPENED TO ME?!"

I sat there with my heart beating out of my chest for a few minutes, and took a drink and decided I must have choked on my saliva or something.  I mean, I even wondered if a fly had flown in my mouth since I was mouth breathing so much.  LOL  I had no idea what to think about it.

I took a drink to wet my throat, and then I laid back down to sleep.  When we got up that morning, I told my husband that I thought I had had a sleep apnea episode that night.  I sort of laughed about it, and said, "Yeah, I don't know.  I just stopped breathing for a second, and it took me a minute to catch my breathe.  I'm surprised I didn't wake you."

I didn't think anything more of it, honestly.  It was scary, but it was over quickly, and I did catch my breathe, so all was OK...so I thought.

However, the next morning, I realized that I had a heaviness in my chest, almost like when a chest cold sets in overnight.  I just thought, "Uggggghhhhh!!!  I feel bad" but never related it to the event the night before.  I realized that day too that I was having trouble breathing, but if I was setting up a chest cold, then that would make sense.

Since I already had a post-op appointment for the next day with a doctor, I just decided that if was still feeling bad tomorrow, I would bring it up to him, and see if it's something to worry about.  Well, the next day, I was still feeling bad.  I was having real trouble doing anything, really.  I was getting completely out-of-breathe just walking across the floor.  It was strange.  I didn't know what was going on.

So, at the doctor's appointment, I brought it up.  I said that I had this weird heaviness in my chest, and was having some trouble breathing.

He told me that it was common to get drainage with the type of surgery I had, and that he thought I'd be feeling a lot better when he took the nose splints out.  So, without doing any type of physical exam of me by checking my vitals or anything, he pulled out the splints, and then said, "See you in a month."

So, I thought then that if he wasn't concerned, then I guess I shouldn't be.  My husband, however, was EXTREMELY concerned.  He wanted to take me to the E.R. right then because he said I was pale as a ghost.  I'm a white-white-white girl though, so pale as a ghost is kind of my thing.  :)

I said I wanted to see how I did with the splints out.  See if it really did help.  The next day though, I was still feeling just as bad.  I had a counseling appointment that afternoon, and the walk it took me from the parking lot, up some stairs, to her office, had me so breathless that it took me a good five minutes to catch my breathe.  She looked concerned for me, saying, "Breathe...just breathe!  Calm down and breathe."

And I told her, "I'm trying, I've just been having some difficulties these last few days.  I just had surgery, and I think I'm setting up something in my lungs."

I knew then that I needed to really see a doc for answers.  That was definitely not normal.  It was past office hours by the time I got home that day, so I decided to just wait and call first thing in the morning to our family doctor.  They had caught wheezing issues with me before, so I felt confident they could help me out.

First thing the next morning, Thursday, March 26, 2015, I called our family doctor.  They couldn't get me in until 3:30 p.m., but I took it because I knew I really needed to be seen.  I also decided that day to take my kids to the park for lunch because I felt bad that for the past two weeks I had been feeling so bad with my recovery, we hadn't done anything.  It was a beautiful day, and I wanted them to get to do something fun.  It was tough on me, but I just sat on a bench and watched while they played.  I didn't stay long, and was exhausted by the time I got home.

My appointment time finally arrived, and off I went to the doctor with my 6 and 4 year olds in tow.  It was a long wait at the office that day, and I had to wait 45 minutes in the waiting room before even being called back.  The nurse was taking my vitals, and asked me what I was coming in for.  I said that I had recently had surgery, and that I was having some chest heaviness with some breathing troubles.  I told her I thought it might be an asthma attack or something like that.  The next thing she stares hard at me, and said, "Do you normally have high blood pressure?!"

I told her that I didn't, and then her whole facial countenance changed to a very, very concerned look.  I didn't know what to think.  It wasn't long before I had two doctors come in the room listening to my lungs, and they said, "It sounds tight, but we don't hear any wheezes or crackles."

Then they dropped the bomb.  My BP had ran 160/90 that day.  My oxygen was at 93%, and my pulse was racing in the 150's.  The doc told me I needed to go directly to the ER because I was showing all the signs and symptoms of a pulmonary embolism.  She said, "I'm not saying that's what it is, but if it is, that's a very serious condition, and we really need to get it ruled out quickly.  The quickest way is to be checked out through the ER."

So, off to the ER I went.  My husband met me at the hospital to take the kids to our neighbor, and then I went on in to wait to be seen there.  They were very busy there that night too, so I had a long wait even for that.  There was a big, red sign on the front desk that said, "If you are having chest pains and difficulty breathing, you need to let us know immediately."

I did tell them that, but it didn't change how long I waited.  I think they looked at me, and thought here is a young 30 year old woman, probably just trolling the ER for drugs.  It happens so much that those of us who are NOT like that, are still treated with the same stigma.

After having a few tests,(EKG, chest x-ray, and blood tests) the doc said that my blood test (D-Dimer) had indicated probability of a clot.  So, it was then that I had to have a CT Scan of my chest done (with and without iodine).  I was scared now.  This was obviously not just a normal congestion, bronchitis, pneumonia, or asthma issue.  This was that "worst case moment" coming to life.

As I lay on the CT table being scanned, Jesus and I had a long talk.  I grabbed hold of His hand right then and there, and knew I had no choice but to completely trust Him in however this would turn out.  I knew something was wrong with me.  I needed an answer, even if it was a hard answer.

I put complete trust that if God had decided that my time was up, that He had an even better plan for my kids than anything that I myself could give for them with me here.  I didn't want to leave them, but I accepted peace in that moment over my own life and death, and over their lives.

I did shed a few small tears in that moment from fear, but overall, God kept me AMAZINGLY strong through it.  He was there for me, no question about it.

It wasn't long before a doctor came in and let me know that the scan had come back positive for clots in my lungs (multiple clots in both lungs), and that I was definitely going to be admitted, and started on blood thinners right away.  I actually got my first dose, right there in the E.R.

I've been learning all I can these days that I've spent in the hospital, trying to prepare myself for what life is like post-pulmonary embolism.  I'm feeling tons of emotions.

The first night was when I had realized that that strange moment on Sunday night was the actual moment this all happened, and I replayed it a thousand times over with more and more realization every time.

The one comfort I can bring from it, is that, if I had died that night, I believe it would have truly been quick and painless.  It came upon me so fast, I didn't have time to be afraid.  The fear didn't set in until I got my breathe back.  And I was not in any pain whatsoever, I just couldn't breathe.  So, that's comforting.

Then I think about it from the perspective of my family, and it becomes horribly terrifying for them.  My husband didn't wake up from all of the coughing and hacking I did when I did catch my breathe, so if I hadn't caught my breathe, I doubt he would have woken then either.  So, to him I would have unexplainably just died in my sleep.  That's horrible for him.  He wouldn't have had a clue what happened.  I was fine, and then I wasn't.  No warning AT ALL!!

The other thought that gets to me is that the way most mornings work is that at the very crack of dawn my 4 year old daughter comes and crawls in bed with me.  That morning would not have been any different, and so she would likely have been the first to discover that something was wrong with me.  I doubt she would have understood, but she would have been very frustrated with me, and the scene would have been really dramatic and horrible as it continued to unfold.

For some reason though, that's not how the night went, and God showed great mercy to me, I suppose because He still has big plans for me to accomplish.  My work is not done.  So, now I need to get busy for God.  I need to make good of this gift He has given me.

While I'm in the hospital, my kids are spread out between relatives having the time of their lives.  They don't know the scary stuff that's all happened.  They just know that Mom is sick and in the hospital.  But, as I said, we've been down this road as a family before, so it was old hat to them.

As I was looking at this picture today of my little two watching a movie, and having fun with their cousins, I looked at their eyes and their happy faces, and just thought, "Wow,  This week could have been very, very different for them."

Just praise God they didn't have to go through that.  My life will end when God decides, and I am prepared any day that it may be.  I have peace in my heart over my eternity.  So, I'm not afraid to die at all.  I'm afraid of PAIN, but I'm not afraid of death.  However, I obviously really do not want to burden my family with that type of trauma and grief to have to carry for the rest of their lives.  But, I do still have peace that IF it is decided that my time is done, God is going to take care of my family and help see them through.

He is good.  He is faithful.  And I trust Him with my life and with my death.  AMEN!