I will be Brave, I will be Strong, I will be FIERCE!!

I don't know a lot about PE recovery, but I do know one thing...it is not fun!!

I have continued to struggle this past month coming to an acceptance of my current limitations, and trying to learn how to cope with it the best I can.

This past week I had a few more doctor appointments, which brought me down a little bit again.

The first appointment was a checkup with my regular doctor.  He was surprised that I was still so symptomatic and that my daily life was still so greatly affected at this point out (which is now over 3 months since the PE hit.)

So, he was glad that I already had an appointment scheduled with a cardiologist because he was concerned that my heart may have been affected during this.  He also scheduled me with yet another specialist (It's a new hobby for me, I'm trying to collect them all!), this time a rheumatologist.  This will be to check for any kind of underlying auto-immune issue that may be going on that could explain things for me.  We are basically just trying to do our best to figure my health mystery out.

I saw the cardiologist on Friday, and he was concerned that my heart-rate was still so fast at this point too, and that I'm still having shortness of breathe and chest pain with any real movement.  He did an EKG in the office, but he also wants to run some more tests too.  He sent me home wearing a 48 hour heart monitor, that is pictured above.  And then they are setting up another CT scan and an echo-cardiogram.

The CT will tell us what the clots have done over these past few months (confirm if they have resolved or not), and the echo will tell us how my heart has held up under the extra workload.  I'm just ready for answers, but I know it will just take time to get everything sorted out.

The biggest concern is that I've moved over to pulmonary hypertension now, which would not be a good thing.  However, if that is what it is, there is treatment for it that can help me to cope better with it, and not to mention, knowing for sure what I'm dealing with can help me appropriately adjust my expectations for my recovery.

As I mentioned in my last post, the few times I tried to shop by myself did not go well, so I got really down about it.  I hate being a burden on other people, and I hate not being able to just go somewhere if I want to.  So, I've been pretty home-bound (except for doctor appointments) since March, and I was starting to go stir crazy.

A few weeks ago, I tried to be brave.  Since I knew that I couldn't manage walking all over the store on my own without causing extreme shortness of breathe, chest pain, and dizziness, yet I WANTED to get out of the house and actually be a part of the world again; I decided to go to Walmart with my family to grocery shop...using a wheelchair.

It did not go well for me.

I am not ready for that, and all that comes with that.  If that's where I have to be eventually, then that's what I will do.  This particular day, however, I was NOT ready!!  I do not like attention drawn to me at all, and using a wheelchair pretty much guarantees that you will draw attention.  Most people were very respectful and nice.  Children had obvious curiosity that was to be expected, but the part that seriously threw me over the edge, was when I ran into someone that I knew.

I was really hoping to get in and out without seeing anyone, and just prove to myself that I could be brave and do this and that I didn't have to hide out in my house all the time.  However, the minute that my friend recognized me, I wanted to crawl in a hole and die.  She came running over to me saying, "Oh my gosh, are you OK?!  What happened?!"

This friend had known about my PE, but the thing is, she has seen me since I was released from the hospital when I've gone to church, and she knows that I am ABLE to walk (which is probably the most humiliating part about using the wheelchair, because my legs are FINE...it's my heart and lungs that are not!).  I just explained that my heart still races whenever I get up and move, and that at this time I'm still not able to make it through a whole grocery trip without needing to sit and catch my breathe frequently.  She seemed to understand, and I know that she was not judging me whatsoever, but it was still so mortifying for me.  I wasn't ready to be THAT person.

It threw me into a pretty intense anxiety/panic attack, and I just buried myself in the bed when we got home, literally shaking and feeling sick all over because of it.  I never wanted to leave the house again, honestly!!  LOL

In the past month too, a lot of those close to me who know how much I'm still struggling have been suggesting that I get a handicapped tag for my car so I don't have to walk too far to get into places, and they also keep encouraging me that there is no shame in using the wheelchair if that's what I need to do.

However, it's just not been that easy for me.  Just a few months ago, I was NOT this "disabled" person, and I'm not ready to accept yet that I might be.  Weekly, I would be grocery shopping with four kids in tow like it was nothing, and now I can't even make through the parking lot without it being an issue for me.  I have to have help with everything.  I can't keep up on all the housework by myself.  When I try to be productive, I quickly wear myself out and then become useless for the next several days.  So, it's been so defeating for me to even consider that my life may never get back to what was "normal" for me.

I will obviously handle it, if that is where this path takes me, but I'm not ready to accept it yet.  And I think that is my biggest push against this whole "handicapped tag" and "wheelchair" use thing.  I think it makes me feel too much like I've given up, and that the hope of getting better is gone.  I don't know.  I just know that I'm not ready for that yet.  So, I'm going to keep pushing myself the best I can, and keep looking for answers as I have been, and hopefully things will finally start improving soon.

I know there are so many people that have it so much worse than me right now, and I'm very grateful that my problems aren't bigger, of course.  However, I'm still struggling with how much my life has changed in such a short time, and it makes it harder that I don't even have real answers for WHY?  No one can give me a good expectation of what my healing and recovery should really be like.  And my mind really STRUGGLES with "unknowns".  I don't like surprises!!  I need to be prepared and know what's coming, but sometimes that's just not possible.  So, I am really trying to work on being OK with that.

There will undoubtedly be a new person who comes out on the other side from this because I can feel changes already taking place, and I can't even imagine what she will be like.  She'll be tougher and stronger than ever, I know that for sure.  I doubt she'll ever really be fearless, but hopefully, she will realize that even when things are scary to her, she will be OK, and that with God's help, she can do so much more than she ever gave herself credit for before.  That's my hope, anyway.

Watch out world, this girl is going to be absolutely FIERCE when all is said and done!!!  She's definitely got more fight in her than she ever knew before. :)

Finding myself again--PE recovery continued

My mind is so FULL right now, that it's just busting at the seams with thoughts and feelings and emotions, and leaving me completely exhausted in the process.  I'm finding myself pulled in all sorts of directions, and it's more than a little chaotic in my head at times.

Can't you just see the exhaustion of it all in my face?

One minute, I'm overwhelmingly grateful for this life and all the happiness and joys and mercies that I've been blessed to experience.  The next minute, I'm at the bottom of the pit; feeling incredibly alone, defeated, and insecure.  I truly don't know which way I'm going right now.

I don't make sense to me, so how could I possibly make sense to others?!

I truly desire to live life more fully than I have ever allowed myself to before, because I've SEEN how quickly it can be taken from you, and I get--more than ever--how precious each day is.  However, what tends to bring me down are the continued physical limitations that I'm still dealing with daily that keep me from being able to DO all that I really would like to be able to do.

And sadly, I don't feel like anyone really gets what this experience is like for me either, but honestly, how could I expect them too?!  It's not a common thing to go through, and it really isn't something I could have ever comprehended before either.

Still, knowing that others don't (and can't) understand, leaves me feeling very lonely.  Like I've got this huge mission in front of me, and I am forced to go on it completely alone, totally unprepared for it whatsoever.  I am winging it, and completely learning everything as I go.  I'm having to rely on God in ways that I truly never had to before, because really THAT'S ALL I'VE GOT to really get me through this!!

I feel there is purpose in this struggle though.  I feel that God is working very much in my life right now, and that this IS a journey meant for me alone.  He's refining me, and preparing me, and equipping me, but for what... it is to still be revealed.

So what kind of challenges am I dealing with right now as a result of this PE?  Well, let's see...

I'm exhausted ALL THE TIME.  Every single solitary action of my day, takes more energy than you would ever imagine.  My stamina is still hit very hard, and doing even the most mundane of things will wipe me out in ways that I just can not even explain.  Things as simple as taking a shower and getting ready require lots of time and lots of energy and lots of breaks.  And THAT'S before I've even really DONE anything!!

I have to choose carefully what I will do with each day, because one grocery trip or church service or just a day of trying to clean up can wipe my energy out for several days afterwards.

I get really frustrated and impatient with my body because I'm not understanding how it works right now.  I don't know how far is too far to push, and how much energy I really have...until I have gone too far and obviously pushed myself passed the limits, and then I'm stuck paying the price.

Just the other day, I went for a simple trip to Walmart to pick up some drinks.  By the time I had walked through the parking lot, walked across the store, and then to the back; I was out-of-breathe and my chest was really burning and hurting, and I was SOOOOO FRUSTRATED because this should not be that big of a deal...but it was.

I'm not used to these type of restrictions.  I have things that I want to do, places I want to go...but I can barely handle a simple trip to Walmart?!  How am I supposed to do anything, if I can't even handle that?!


I feel like I'm terrible at relationships right now too because my perspective is WAY different than it was just a few months ago.  I seem to expect way more out of people than what they are truly capable of giving.  And I'm giving them in return way more than they were prepared to get.

As an introvert, I've never been a fan of small talk anyway, but now even moreso because I want all of my relationships to have a much deeper meaning and connection.  And that leaves no place for small talk at all.

When I ask someone, "how you are doing"; I don't want to hear just "fine" or "good".  I want to KNOW what's going on with them.  What struggles are they currently facing?  What victories have they won?  In what way can I make a more positive impact in their lives?!  How can I make my time here with them count?!

And since, this is really not how most of the world functions in relationships, I'm coming off as possibly... pushy, creepy, weird.  Who even knows?  I just know that I'm too much work for most people right now!!  LOL

On the other hand, my life is also very centered right now on the daily struggles I'm facing, and I don't know how much to really share of that with other people.  I don't know how much others want to know before it feels like I'm just "seeking pity" rather than truly just sharing where I'm at right now.  And I also don't want to burden people with the responsibility of thinking that I expect them to "fix" this for me or make it better.  If I share, I'm usually just sharing just to get it out of my head, so I can think about something else for a while.

So, yeah, I don't really know how to talk to friends about my life right now because everyone has to be tired of hearing the same old news, and it can really bring the mood down.  I hate that.  That's not who I want to be.  I want to be the one lifting people up!!


I'm also feeling like a terrible mother right now too because, typically, I keep the summers fun and interesting for these kids.  For my own sanity, it's better to give them something to do than just let them run free and wild all day long, but I can't do anything that I would normally do right now.  I just don't have it in me.

It takes me a long time to finally get up and moving in the morning, and then I still have to lay back down and nap every afternoon.  I'm consistently late getting dinner finished most nights because it just takes so much effort to really make it happen.  And I've been basically cycling through a few basic recipes that are fairly low effort just to get by, so it's been pretty bland and boring in that way too for them.

What kills me is that my kids are growing so quickly, and I feel like I'm missing priceless opportunities with them.  That bothers me a lot, because I WANT so much MORE for them than what I am able to give them right now.


I really don't understand this season of my life right now, so that naturally frustrates me.  However, I do trust God completely with this!!


Earlier this year, I would say around February, God started stirring inside me in a way that I've never felt before.  There was a lot of unrest that I just couldn't explain.

I didn't know what, but I knew that God was about to do something MAJOR with my life, because I felt like the Holy Spirit was literally about to bust right out of my body.  I mentioned this just once to my husband one day, saying,"I don't know why, but I feel like God is about to really bust out in a very big way in my life."

He had no idea what to make of that statement, and the thing is...neither did I.

I knew our church was gearing up for a special revival, so I thought maybe it was related to that.  I had been asked to take on a new ministry opportunity through our church, so I questioned if it was possibly related to that.

Within weeks though, my life flipped in the most unexpected sort of way.  I had the pulmonary embolism event and everything that was normal and natural to me was now completely rearranged.  I struggle in ways that I've never had to struggle before.  And, I have no doubt whatsoever that this is all "part" of the work God is doing, even though it is extremely uncomfortable for me in this moment.

I'm eager to see what God is going to do with this.  I know without question that my efforts and sufferings won't be wasted, and I am honored to get to be a part of such a special mission in this great, big Kingdom Plan of His.

 All I ask is for people to pray for my strength through this journey.  I don't see the end yet, and that very much intimidates me, but thankfully my faith is strong and He is truly sustaining me each and every day without fail, giving me just what I need in each moment.  I'm so thankful for that.

I'm on a true mission to find myself right now, with no idea how it ends, but knowing without question that something wonderful will come out of this.

Oh my, I really have asked Him many times to take me deeper in my faith; 
and boy, has He ever come through on that one!!  I am truly in it deep now!!  So, definitely think long and hard about what you ask God for because you really may not be expecting the way He chooses to answer your requests. :)

Doctors, Doctors, Doctors...Life after P.E.

The past few weeks have been a roller coaster of emotions, combined with a lot of exhaustion.  I have seen so many doctors, and I am so tired of sitting in waiting areas...trying to find help with the kids so I can go to these appointments...and mostly re-telling my story and symptoms over and over again.

It is physically, emotionally, and spiritually draining!!

I first went to a post hospital check-up with my regular doctor.  Since the local hematologist had no answers for me as to why I had the P.E., it put my primary doctor on extra alert to try to help give me some answers.  During his exam, he noticed a couple of moles that looked very suspicious to him.  So, he decided to send me on to a dermatologist for a full skin check.  Basically, because cancer is one of the leading causes of unexplained pulmonary embolisms, so this definitely needed to be taken seriously and addressed quickly.

During that appointment he also decided to refer me to another hematologist for a second opinion, and also to a neurologist to better understand the myoclonic jerks that started after my P.E. and what we can do about them.

The dermatologist appointment was the one that was completely unexpected.  I didn't even want to consider that there was a possibility of cancer taking over my body to the point that it had already affected my blood without me even being aware of it.  Just the whole thought would crumple me in a ball, and leave me feeling like I needed to puke because I knew that if that WAS my answer to why I had the P.E., my life was about to get a LOT worse, and I just wasn't sure if I was prepared for the battle that would then ensue.

At that appointment, the dermatologist ended up taking 2 moles that showed strong signs for melanoma.  Not unexpected, but definitely not COMFORTING at all!!  And what was worse is that it was going to take 2 weeks before the lab results would be known.

Here are pics of the suspicious moles:

They went ahead and scheduled me to come back in 2 weeks later to go over my results, and that freaked me out even more because most people who had experience with mole removal said they were just called with the results, so WHY did I have an automatic appointment to review mine.  It took a lot to get through those two weeks because uncertainty sets my anxiety on overload, and sadly, I ended up BACK in the derm's office by the next week because one of my mole removal spots (the first pictured above) was not healing correctly and the pain just kept getting worse.

Here is a pretty gross picture of what that experience was like:

Evidently it was supposed to be pink and fleshy looking in the middle, and the other spot was, but this one was not and it was really painful and angry looking.  And it was aggravated even more by the fact that I am allergic to the adhesive from the band-aids, which just made for an even more miserable experience all around.

I am about a month out now, and though the other one has pretty well healed completely, this one is still not even close, and still just yuck.  Doesn't hurt as bad thankfully, but it is not pretty to look at, for sure.

Anyway, after that LONG 2 week wait, where I had completely prepared myself for the idea that at least one of them was going to come back positive for melanoma (because I'd rather believe the worst and hope for the best, than get knocked off my feet thinking everything was OK and then find out it wasn't), I finally got my results.

NO CANCER!!!  PRAISE THE LORD!!

The one that had trouble healing was actually completely fine, just had some fibrous tissue in it that made it look strange.  The other one (the dark, irregular shaped one) was a compound dysplastic nevus and that basically is a pre-cancerous spot.  It had not turned to cancer yet, but had a strong potential to and it did need to be removed.

I will go back for yearly skin checks now, and I am supposed to do monthly self checks to make sure no new moles are growing or old ones are changing.

Whew!  That was over!!

That same day, I went to the neurologist.  It was a decent appointment.  The best guess at this time is that I have postanoxic myoclonus and that's basically where your brain gets damaged due to lack of oxygen for a period of time.  It's considered common in people with pulmonary embolism, near drowning, or cardiac arrest.

It's curious in my case because I didn't have to be resuscitated or intubated, but without doing a ton of testing, this is the most likely explanation for now since they started directly after the P.E.  So, they are treating me with anti-seizure medication (levetiracetam/Keppra) for a few months to see if that improves them.  (Myoclonus is a form of seizure as well, but typically people with true myoclonic seizures get them in childhood, but they can be caused by brain injury.)

That med is actually helping quite a bit.  I still have some during each day, but it has slowed them way down, and I am able to sleep much easier now, thankfully, which is what I was really hoping for.

So, now marking cancer off my list (THANK YOU, JESUS) and getting my myoclonus treated, the next appointment was with another hematologist to hopefully help give me an idea of WHY the pulmonary embolism happened, and more importantly, how to keep it from happening again!

This appointment was sort of a nightmare.  For those who have never seen a hematologist (which is a blood doctor), they are usually both Oncologist and Hematologist.  And, of course, an oncologist is a doctor specialized to treat cancer.  So, going to a hematologist appointment is always intimidating for me because I have to share the waiting area with people who are going through all sorts of horrible and very scary things (not that my P.E. hasn't fit that same bill, obviously, it's just different), and it's just really humbling and overwhelming.  I can't help but feel blessed for my problems, but strangely guilty too all at the same time because it's not fair that these people have to go through whatever they are going through.

This appointment was at Vanderbilt Hospital, so that experience was just magnified that much more too.  The people coming here were numerous and obviously dealing with a very wide variety of horrible cancerous conditions.  And there I sat right in the middle of them, unable to ignore the magnitude of the problems these people are truly facing, and crumbling under my compassion for what these people must be really going through.  It's truly heartbreaking.

They told me to get there an hour before my appointment time because it would take that long to get registered.  And then told me to expect to be there for about 2-3 hours total, not knowing that every bit of that would be JUST WAITING to see a doctor.

My appointment was schedule for 12:00, so I had to be there at 11:00.  Not enough time to have lunch before going in.  And then I didn't even see the doctor until 2 p.m.  I had a headache starting the day out, but by the time he finally came in the room, I was in full blown migraine mode, and was so sick that I felt like I needed to puke.

I only really had one question for this doctor..."Why/how did this pulmonary embolism happen?"

My body has been strange for years, and I will tell you, I have had this weird feeling in my gut for a long time that I was going to die young.  It's just something that has been in the back of my mind for a long while that I just can't seem to shake, mainly because I have been through so many STRANGE, UNEXPLAINED, and SCARY events.  I've searched for answers many times, but I keep coming up empty.

The doctors tend to get focused on just one symptom going on with me, ignoring the big picture and how I have multi-system, unexplained dysfunction going on.

And the worst about it is that a lot of times it makes me feel like I'm crazy and that it's all just in my head.  Though, I know logically, these things and events are real and have happened!  It's just hard when you keep having weird stuff happen to you, and your doctors really just have no idea or any answers to offer at all.  It's helpless and lonely.

My current suspicion is that I have some auto-immune disorder, like possibly Lupus, that just has not been detected yet.  Honestly, I don't really care what answer or "label" they give me, I just need to know WHAT it is, so that I know HOW to treat it and prepare myself appropriately.

Sadly, by the time the doctor came in, within just seconds of him starting to talk, it was clear that he was not going to be able to (or even interested in) helping answer my biggest question.  He reminded me that for the majority of blood clots, there is usually no known cause (called unprovoked pulmonary embolism), and it just sort of happens in a "perfect storm" scenario.  But, we can't even explain what my "perfect storm" really was.

He was willing to reevaluate the need for continuing with blood thinners after 6 months, but wants me to see a cardiologist for testing first.  He said ultimately the decision would be left to me depending on what risks was I more willing to live with...risk of clotting again by coming off of the meds or risk of severe bleeds for being left on the meds.  And with someone with history of BOTH of these scary events, HOW am I supposed to make a decision like that?!

And he said that it just depended on what my "goal" was.  If my "goal" was never to clot again, then I should stay on the blood thinners.

Since my head was splitting in two at that moment, I couldn't even think through half a thought in that room.  However, as I've thought about those words since, I know what my "GOAL" is now though, and I'm not sure why this might seem strange or unreasonable, and really it should have been pretty obvious to any doctor.

My GOAL is to be HEALTHY and hopefully be able to live long enough to see my children grow up.  That's my goal.  Whatever has the best possibility of getting me THERE!!

He said, "You seem to be having a hard time accepting that there just really isn't an answer to give for this sort of thing, and I don't know how to help you with that."

And he's right, I DO HAVE a hard time accepting that, since this is MY LIFE we are talking about and it's ME that has to live with the consequences of what happens because of whatever is going on within me and the choices we make on handling it.  And I really don't think that's unreasonable!!

My life has been changed significantly because of this, and I just don't know what the best thing to do is.  I'm tired of chasing rabbits.  I'm tired of doctor appointments and dead ends.  I'm tired of being only 35 and what should be the prime of my life, and feeling like I'm dealing with things that I shouldn't even have to think about for at least 30 more years.  Not even feeling comfortable planning for the future at all, because I don't really feel like I'm even going to be here for it.  I know we all have to remember and be prepared for the fact that none of us are promised tomorrow, but I just feel like my chances are much higher than average right now that my tomorrows really are greatly, greatly limited.

I feel like it is seriously going to take me dying in order to be taken seriously by these doctors, because obviously ALMOST dying isn't enough.  And I wish that even if I couldn't get an answer to help improve my own health, I could at least get some answers for my children so THEY won't have to go through all of the crazy and scary things I have had to too.

So, yeah, a lot of this post isn't really cheerful, I know.  I'm sorry.  I'm just tired and confused and I'm on day 2 of a monster of a headache, but I'm still trying to push forward no matter, and just live each day the best that I can.

The one thing that keeps me sane and strong through all of this though, is that I know that God is in control.  If I didn't have that, I would be a real mess.  I obviously can't put my faith in the medical community because they are just human...just like me, and with that comes obvious limitations.  But, Jesus...the Creator of the universe...can be trusted.  He knows exactly what is going on with me, and He is with me every step of this.  He knows my tendencies, He knows my fears, He knows what I need, and He knows what my kids need.  No matter what happens in my life, I have been assured that He is working it for my good (Romans 8:28).  So, I don't have to fear tomorrow, because He has given me the ultimate Hope and promise of His eternal love (John 3:16-17)!!

Thank you, Lord, for just continuing to be with me through it all.  I know You are good, You are faithful, and You can be trusted.  Please sustain my strength and faith in my moments of weakness and fear.  Let me feel Your presence with me always, and help lead me in the paths that You need me to go and equip me to do the work that You have called for me to do.  I thank You, and praise You always!!  In Jesus precious name, I pray. AMEN!!

I also thought I would share some of the CT pics here from the night I was admitted in the hospital for the pulmonary embolism.  The actual scan had 100s of pics on it, because a CT is a slice-by-slice image of the body.  So, these were a few that really stood out to me:

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