Thursday, May 23, 2013

I'm an Alien (and it saved my life)

Warning:  Not remotely sewing-related.  Although there was a quilt involved at one point that I slept under in the ICU.

This is probably going to come out as a very long-winded and jumbled mess, but I want to have the experience documented before I forget the details.  The short version is that last month my left leg started swelling, and the cause was found to be a nearly 3-foot-long blood clot which resulted in multiple procedures, LOTS of drugs, and 9 days in the hospital, 4 of which were in the ICU.  I’m almost fine now, getting used to have to wear a large compression stocking and take blood thinners, and will be meeting with one of the nation’s leading hematologists to come up with a further treatment plan.

Before I begin, I should point out that since going back to work on January 2nd from maternity leave, life has been crazy to put it mildly.  Part of it was leaving my new daughter at daycare (especially since my son spent the first 9 months at home thanks to a well-timed if unfortunate lay-off for my husband), along with all of the hormonal upheaval that comes from having a baby.  On top of that, my son was acting out at daycare, throwing temper tantrums, hitting, and generally being an unpredictable pain.  He has always had a quick temper, but he was losing emotional control, probably from the new baby and mommy’s stress level.  Then, things settled and the daycare sick season started.  With 2 kids, this has meant sharing germs, and either me or Brandon were out of work at least once a week over the course of a couple of months.  My employer, who was normally pretty understanding, began to think I was unreliable, even though none of my work ever actually got behind.  Evan also started a new phase where he was hitting at school, not being bad, just playing inappropriately.  According to the doctor, he is very far ahead of his peers intellectually, and behind socially.  Amongst all that, my fiercely independent grandmother has been diagnosed with stage 4 cancer and is very unhappily living in a nursing home with hospice being brought in.

We got to a breaking point and started to look at me quitting my job and staying home to reduce some of the stress.  After a lot of discussion and number crunching, we decided to just calm down as “this too shall pass”.  We worked with Evan on playing appropriately (ex. Girls are not bad guys – don’t ninja them!), and decided I would focus on proving myself again at work.  Brandon is less attached to his job and has a large network of people he could fall back on if something happened with his job, so he would take most of the sick days with the kids.

So, for a couple of days (seriously), all was well.  I had a heart-to-heart with my employer and started trying to get my act together, and we started working more on meal planning, laundry/cleaning planning, etc. to reduce stress.  Evan seemed to pass his phase – yay!  My grandma is still not doing well so other than lots of visits not much we can do there other than lots of visits :(

FINALLY – THE ORDEAL (probably with too much medical TMI if you are squeamish about such things).  In mid-April I started feeling like a pulled a muscle in my upper left thigh.  I didn’t think much of it – infant car seats and 3 year olds are heavy, and let’s face it, I’m not the most coordinated individual   Then on Sunday night, I was sitting in the floor with the kids and noticed that my left leg was larger than the other, and stiff.  It didn’t hurt, just looked at little ballooned.  I went to the doctor on Monday afternoon, and it was worse.  They automatically thought it was a blood clot and did an ultrasound.  The ultrasound tech had trouble seeing through the swelling, but they didn’t see a blood clot, so I was sent on my way.

The next day, I woke up to my leg being about 3 times its normal size and very painful.  I went back to the doctor, who was flabbergasted.  They had me walk down to the lab for basic blood work, and I threw up from the pain of that slight walk.  I can handle pain – this was insane.  Blood work was ok, but the doctor determined the lymphatic system to my lower left pelvis and left leg were completely blocked up.  I was sent for an MRI to see what was going on.  My wonderful mom drove me, and Brandon was stuck an hour away for work.

A note – getting an MRI really sucks if you are claustrophobic.  And it’s LOUD.

I was originally told that the MRI results would take 1-2 hours to be read.  As I was getting unhooked from the machine, the radiologist literally came running into the room and told me to go straight to the hospital to be admitted, that I had a massive blood clot that was fully blocking everything.  He would be contacting the hospital to have a team ready to do surgery.  The large clot was called DVT (deep vein thrombosis).

So Mom and I went straight to admitting with nothing but my purse.  My poor mom was beginning to delve into emotional basket case territory, I was apprehensive but really just wanted more info.  My maternal grandmother actually died of a pulmonary embolism (heart attack resulting from a blood clot that has travel to your lung), so my mom’s emotional state was pretty understandable.  When we got to the hospital, I was wheeled into admitting and just sat there.  After all the panic from the radiologist, I expected a bit more fanfare.  Come to find out, the ER was so backed up that there were 25 people on stretchers waiting for a bed to be admitted, so the admitting group wasn’t in a hurry for me.  Meanwhile, the radiologists and NICS (hospitalists) doctors were reviewing my MRI scans and calling around the hospital trying to get me to a bed.  I finally got put into one of the ER’s observation rooms.  We met with one of the Interventional Radiologists, who (in a nice way) said I would need several procedures as they were concerned I would drop dead at any given moment.  The first procedure they would go in my chest through the side of my neck and put in a “filter” to keep any pieces of the blood clot from travelling through to my lungs and heart  through the main vein in the chest.  He also wanted to do a procedure called Thrombolysis, which had about a 5% chance of a severe bleed-out, stroke, or internal bleeding due to the sheer amount of blood thinners and clot-busters that would be pumped in.

Procedure 1 – The Filter (aka I’m a science experiment)
The first procedure, they numbed my neck and basically fished a line down with the filter attached through the main chest vein (the IVC).  All of this is done with cameras and scans, so no major cuts (THANK GOD).  The Interventional Radiologist (who are basically radiologists who do invasive surgery) started making weird noises and calling in his techs and assistants.  He explained that I didn’t appear to HAVE an IVC, but obviously my heart and lungs were getting blood somehow.  He left in a huge IV line in my neck and wheeled me over to get a CT scan to figure out what was up with my wiring.  While waiting for the scan, it finally dawned on me that my life was probably in danger.  Very in danger.  So I asked the NICS doc just how in danger it was.  His response?  “It’s less in danger now than I would have said it was 4 hours ago.” Nice bedside manner, asshat.

Procedure 2 – CT Scan
I’m listing this as a procedure because although it was the simplest, it was probably the most traumatic.  A CT machine looks like a giant donut, oddly enough.  It was a quick scan, and I lay there beside the donut for a while watching a group of 15-20 doctors, techs, and nurses look at a monitor of my scan results with lots of gestures and arguing.  I lay on the stretcher in the CT room alone for almost 30 minutes while the doctors deliberated, afraid that since they couldn’t put in a filter, the clot would travel and I would die.  I thought about my family and prayed.  And cried.  When I was with my mom and Brandon (who had been able to get to the hospital right after my failed filter), I tried to be calm – especially for my mom.  Brandon is the tough one but I was trying not to upset them or myself until I had all the information.  This was the point where I felt like my fate was being decided, for better or worse.

Finally I was wheeled back out to my family and assigned to a room in the step-down ICU.  I was placed on an IV drip through my neck of Heparin, a blood thinner, and saline.  The plan was for me to have Thrombolysis in the morning.  Over the course of the night, I was not allowed to move my leg, which had to be elevated.  Brandon slept in the recliner next to me, mom went to our house to stay with the kids.  I spent the whole night anxiously awaiting to have a heart attack.  Thank goodness for the Hallmark Channel, which showed Golden Girls the whole night.

An Alien on the Inside
The next morning I found out that once I was on the blood thinner, I was barely in danger as it keeps the clots from expanding AND breaking off.  Thanks again, asshole NICS doc, for not telling me or my family this the night before.  The radiologists told me the Wednesday before my first surgery.
Here’s the interesting part: the main reason that I hadn’t had a pulmonary embolism or worse is because my IVC, or central vein, is calcified closed.  My blood doesn’t go through my body the way most people’s does.  Instead of coming up through my chest, it goes around my ovaries and through my liver and kidneys (which I don’t totally understand).  Aka - I am completely wired wrong due to a birth defect that probably happened in utero.  My collateral veins were too small to let the clot in, and the clot just kept building up under the closed IVC until it was 3 feet long – belly button to ankle.  To put that in perspective, I am 5’2”.  I became the talk of the hospital, to the point that Brandon started joking we should charge admission.  I swear we saw every surgeon, imaging tech, and nurse, as they wanted to look at my elephant-man leg over the course of my stay.

Procedure 3-5 – Thrombolysis
The next morning I found out that once I was on the blood thinner, I was barely in danger as it keeps the clots from expanding AND breaking off.  Thanks again, asshole NICS doc, for not telling me or my family this the night before.  The radiologists told me the Wednesday before my first surgery.
Thrombolysis is a procedure where they use a camera to insert a tube that squirts TPA, a clot-buster, directly at the clot.  They would be going in through the back of my knee and the line would stay in and continuously squirt the drug at the clot for 24 hours until they went back in again with cameras and scans to see the progress.  The risk of the thrombolysis is internal bleeding.  In addition to the blood thinner, the clot-buster is what they give stroke patients to prevent their blood from getting too heavy in their brain, and is powerful; I was put on a constant stream of it on top of the blood thinner.  They estimated a 5% chance that I would have severe internal bleeding, but because I’m so young, they assured me all would be well.  Yikes.
The procedure itself wasn’t bad, the pain nurse was amazing and I was basically in a fuzzy haze.  I laid on my stomach while they put everything in my leg, and was sent to ICU.  I had to be in ICU to be monitored for bleeding.  I had wires coming out all over the place and several monitors all attached to my bed.  I was only allowed to have clear liquids (jello or broth), but I didn’t really eat that.  I couldn’t move and had lots of pain killers pumped in.
The next morning it was back to the OR.  My entire leg was free of clot, all that was left was my groin and stomach.  They were thrilled, and it felt like half the hospital came down to watch the cameras of the procedure.  They repeated the process but moved up the tube to target the higher clot.  More fluids, pain killers, and wires for the night while my mom and/or Brandon slept in the office chair.  Funny thing, they don’t encourage overnight visitors in the ICU and try to make them uncomfortable so they leave.  I was an unusual case (most ICU patients are semi- or unconscious) and was highly annoyed at the 13” TV mounted 15 feet in the air.
On the 3rd morning, most of the clot was gone.  My leg had gone down a lot but the vein and tissue were stretched out.  They determined that I have May-Thurner Syndrome, which basically means that my leg veins/arteries cross and one becomes dominant and squishes the other.  That’s why the left leg got clotted and the other stayed ok.  The surgeon put a metal stent in my left groin vein to prevent that and keep the blood flowing.  The Thrombolysis tube was removed.

5 More Days
After the last Thrombolysis, I was moved out of the ICU to a regular room and allowed to hobble to my own bathroom with a walker, which was potentially the highlight of my life after using a bed pan and not being able to move for 3 ½ days.  Most of the wires and monitors were removed except for a heart monitor for the first night and the neck IV to administer pain meds.  I got started on oral blood thinners and a blood thinner shot as well until the oral one was in my system.
I was even allowed to eat again, but it was hospital food which is really hit or miss.  People came in every hour or so to check on me, take my vitals, and offer me pudding.  On the second day, I even got to take a sitting shower.  It was the second highlight of my life after 5 days of sponge baths.  Over the course of this, I got a little stronger, got weaned onto weaker pain meds, and was encouraged to hobble around the room as I could.
Friends and family came to visit, some sent flowers.  I missed my kids so bad I cried and cried a few nights.  Evan did get to come visit for a few minutes on two separate nights, I pretty much lost it when I saw him.  Good thing I was weak or I might have crushed him!  Finally, after 5 days in a normal room, I started hinting about going home.  The neck IV was gone, and I could give myself the blood thinner shot at home (in my stomach – like a boss!).  They let me go home and I spent 4 days recovering at home before returning to work.

The Aftermath
Physically, I don’t have a lot of effects.  My leg will still be recovering for several months, as it gets sore easily and can begin to swell as the veins and tissues were so stretched out.  I have a tiny scar on my neck, but you have to be really looking for it, as it basically looks like some kind of blemish.  I do have some lovely stretch marks on my leg that I’m now sporting – boo!
I have to wear and ugly and uncomfortable granny stocking on my entire leg for 6 months, and after that I’ll still use it when I sit for long periods of time or when I’m on my feet a lot.  Hopefully my vein to go back to a normal size after 6 months and I won’t have as much need for the stocking.  It sucks that I have to wear it all summer and fall – no shorts for me!  Maxi dressed and jeans it is – maybe flowy skirts will come back in style?
The bigger adjustment is that I have to take blood thinners, which are a little scary, and I have to be careful with Vitamin K – no salads for me!  Yuck.  Avocados must be limited too, heartbreaking.  Unfortunately it is likely I will be on blood thinners for life.  I’m being referred to a national expert in at UNC this summer to make a lifelong plan regarding blood thinners and possibly “rewiring” my veins and blood flow.
I am not allowed to do high impact exercises, only walking or swimming for the next 6 months, and I’m not allowed to do anything “thrilling” as they put it – like roller coasters, mountain biking, or even hiking where I’m climbing on sharp rocks.  That’s the joy of blood thinners, injuries are much more dangerous.  My medication also interacts with just about every other medicine under the sun, so I can only take Tylenol, and alcohol must be at a very minimum, if any at all.  I'm not really a drinker except on special occasions so that's fine, but I'm a wimp and need to function when I get sick, so that medication part really sucks!!

The Cause & Moving On
At this point, the doctors’ best guess is that this was caused by birth control pills and a disorder they discovered called lupus anticoagulant, which is basically something in your blood that makes you more likely to clot.  Lupus anticoagulant is luckily not lupus, and I don’t have any immune system disorders or cancer or anything like that.  As far as the birth control pills, I always knew they carried some risk of blood clot, and apparently I just got lucky.  So now I am banned from birth control pills and any kind of hormonal medication for the rest of my life.  Since they believe I am overly sensitive to hormones (which I already knew from postpartum problems I had with both kids), they also don’t want me to have any more children and believe it would be dangerous to me with all the blood issues.  Although we had pretty much decided we were done having children, it still makes me very sad to be told that my baby days are over.  My husband will be getting the snippy-snip sooner than we planned.
Overall, I feel VERY VERY blessed and lucky.  More than I can say.  People with 3 foot blood clots are not supposed to survive, and they aren’t supposed to recover completely as I am on the way to doing.  I got to sign lots of paperwork saying all of my files will be used as training for future techs and MDs to show a success story.  I thank God every day for guiding those doctors and for making me “weird”.  I also feel very blessed to have such supportive and wonderful family, friends, coworkers, and even strangers who I met in the hospital.  I will certainly not take life for granted anymore.  None of all that stress and drama mattered when I thought I was going to be taken away from my beautiful family, and every day feels like a blessing, even when it’s crazy.

I seriously doubt anyone made it this far, but I wanted to get this out and on record for my own sake.  Life is good and I am looking forward to mine and my family’s next adventure – although here’s hoping it’s a lot more fun!!

Friday, May 17, 2013


I am making a few changes to the blog as I start trying to get back into it, starting with the name.  Papillon Playground was more of an inside joke between my husband and I, and outside of our little bubble it was just confusing (not to mention I felt pretty stupid trying to explain my blog name).  Hopefully the switch worked!

I like the new name because it's simple, sewing-oriented, and also more me.  Because as much as we try to have the perfect life we envision, there are always a few stray threads that can throw you off or make you rethink things.  Plus, although I'm a Type A perfectionist, I'm a pretty messy and clutter-y crafter :)  I also want to blog a little more about my family, mostly for my own benefit - it will force me to put all the pictures I take somewhere!

I have several projects to blog about, and a couple of life events that happened and hopefully will happen.  Stay tuned!