Thursday, September 16, 2010

Down the rabbit hole...again.

So here's how Tuesday went: at the hospital at 6:15. It is, in my opinion, unnatural to leave your house when it's still dark unless there's cows to be milked, wheat to be thrashed, or roosters crowing in the nearby vicinity.  Since I was feeling slightly antsy, I only said that thought out loud once.

Regular hospital blah-di-blah ensued - imagine these events in a quick edit style, ala Scott Pilgrim or Shaun of the Dead:
  • changed into gown
  • placement of acti-tred non-slip socks
  • IV set up (after only two sticks...  yes!)
  • checked and marked for pulses in both feet
  • leads for EKG thingamabobs stuck on
  • blood pressure cuff velcroed
  • heart rate monitor positioned on left pointer finger
The nurse asked me the same ol' questions about medications, allergies, etcetera and before I knew it: 7:30.  Another nurse came over and said, "Are you almost finished?  They want her on the table as close to 7:30 as possible."  Booyah.  Let's make this happen!

Off we went.  I couldn't believe it was happening again, so soon.  Then again I really had no idea back in June what to expect 3 weeks post, much less 3 months.  I just knew I wanted to be fixed.  So there I was, back in the ever-capable hands of my fantastic doctor ready to go for round two.

There was still more prep to be done but the best part was when they gave me fresh oxygen.  That little cannula is an annoying thing to stick in your nose but there's nothing like breathing pure air.  The nurse said my heart rate was up (surprise surprise: neurotic girl in a cath lab) so she pumped in a little sedative before we got started.  Dr. X came in and apologized for not having any access to good music at this hospital.  It was the least of my worries, but I (as always) appreciated the thought.  Once they got a lil more sedative in my blood, the details get a little foggy.  The next thing I remember him saying was, "little pinch..." when he numbed the tiny spot for the incision and before I knew it, it was Innerspace, minus the whole Dennis Quaid flying a spaceship inside my body.  So not really Innerspace.  But you get the point, right?

Just like before, the little pinch was all I felt of the catheter going into my femoral vein...

...and for the most part it was the same game, different day.  For the most part.  Remember how I mentioned before that he saw a blockage in my sigmoid sinus, just inside my skull, in my MRV in July?  Well, there's a reason they call venograms "the gold standard", because once he got inside my head and took a good look:  nothing.  I'm thankful for that.  Mainly because I could feel the catheter up inside my noggin and it was not a good feeling.  If he'd seen something that needed to be fixed, of course I would have wanted them to fix it.  I say "them" because I vaguely remember meeting Dr. Y (the neurointerventional radiologist) in the cath lab too.  It's not like we could shake hands or anything - I was swaddled in blankets and sterile cloths.  So I gave him a head nod and as his services were no longer required (sigh of relief) he went on about his day.

What did he find in my silver veins?  No restenosis - so none of the areas he treated in June had closed back up, even a little bit.  He did find three new areas to treat: "incompletely treated stenosis now completely treated" as he put it.  Both valves at the bases of my right and left jugulars were stenosed/malformed and he found a web in my azygous vein - all ballooned; no stents required.

The balloons were a bit bigger than what he used the first time- almost twice as big.  It was uncomfortable the first time - just a build up of pressure.  This time?  From what I can recall during my dopey state of mind... it hurt. So much so that even in the state I was in I tried my best to communicate it.  But I couldn't even get an "ow" out.  It was like a sad, gutteral grunt - something like, "urggghhh...".  I guess I got my point across because they dialed up the Fentanyl with a quickness and I settled back in to la la land in no time.

I remember asking him how it went and if he checked my iliac vein for May-Thurner's.  He said yes he did and it looked normal.  Then I remember him saying something about my azygous and "significant improvement".  But let's remember: those drugs were dancing through my body and to say my recall is vague would be an understatement.  I kinda wish I was a bit tougher and could've been more awake - and this report wouldn't be so hazy.  Chalk it up to Chicken Little (yes, that would be me).  No, the sky wasn't falling; but there were 18 mm balloons inflated inside my jugular veins.  Ouchie.  Cut me some freaking slack.

Once I was all sewn up (no stitches, just more Dermabond), they wheeled me to recovery.  I slept and then I heard Keith asking me how I was feeling.  How was I feeling?  Sore.  And sleepy.  That pretty much summed it up.  Just like last time: no "on the table" miracles to report.  That's okay, though. 

Keith did show me some pictures - Dr. X printed them out before he went to talk to him (yes, my doctor is that awesome) - complete with arrows pointing to what he'd fixed, each page labeled "before" and "after".  Dr. X told Keith he felt really good about it and that he was really pleased with the results.  He warned Keith that I would have a nasty headache the next day but that he thought I should see "significant improvement" - there's that phrase again.  He also said he wanted to talk to both of us when I was a little more... with it.

So I slept.  And I slept some more.  And then, just when recovery was going smoothly, I had to pee.  They wheeled me over to the bathroom and though I got up slowly I guess it wasn't slow enough.  I've never passed out before but I'm guessing that's what it would feel like - heavy limbed but Stretch Armstrong-y at the same time.  Then I broke out into a cold sweat.  ugh.  I avoided puking (though just barely) and got a hefty dose of Zofran which made me sleepy on top of sleepy.

I was moved from a recovery bed to a recovery recliner.  We hung out for awhile and waited for my body to chill.  And I was still hoping to speak to Dr. X before we left.  I think the nurses were ready to shuffle me out and make room for another patient because at one point they just said, "Well if the doctor has already spoken to your husband I don't think you need to wait to speak to him." If I hadn't been so loopy I would've waited.  I haven't spoken to the doctor in person since I had my follow up consult in July and I wanted a full explanation of what he did.  Keith, bless his heart, relayed all the info to me but I wanted to hear it myself.  First hand.  Poo.

The nurse gave me a shot of Lovenox and an aspirin (anti blood-clot/blood thinner combo) and sent us on our way with a script for 6 shots of Lovenox and a note to take daily doses of regular aspirin for two weeks and baby aspirin for two months.  And oh yeah, a script for a follow-up ultrasound for the next day.

He's really got his protocol down - I guess he's had some time to get it right.  I mean, I was one of the first patients he treated so it makes sense that he's got more practice now.

What happened next? More sleeping.  Sore neck.  Headache (not a monster headache, more like a nagging headache).  Ultrasound was good -both jugulars were open and dumping deoxygenated blood back to my heart.  Dr. X offered to call something in for my headache - I was thinking, like, mega-dose ibuprofen or something.  Nope.  Homeboy called in some Vicodin.  My head didn't hurt that bad.  But Keith picked up the script anyway, just in case.

The thing that was nagging me: Dr. X said in an email to me that pretty much everyone he's treated that gets a bad headache the next day has significant improvement of MS symptoms.  But what's a "bad" headache?  My version of "bad" could be a pin prick to someone or a migraine to someone else.  That's a relative word.  Does that mean I won't get symptom relief? Or will it be marginal? 

Oh, God.  Please don't lock me in to this roller coaster again.  Let me be ok with whatever I get - even if it's nothing.  It is, after all, only two days post.  The marker spots for my pulse points are still on my feet and I can't get the tape residue of any parts of my body that had something stuck to it.  My neck still hurts and I'm still exhausted.  It. will. take. time.

Patience.  Tell me where to get some of that?

Sunday, September 12, 2010

Setting a second baseline?

Went for pre-op on Friday.  I'm going back into the hospital Tuesday for a second venogram/angioplasty.  I feel like I should talk about my improvements, etc up to this point and we'll probably film some video today...

But there's not much to report. The two major improvements, with spasticity and bladder, haven't stayed 100%. Last night, for example, I probably got up 4 times to pee and that's been happening more and more. It's not a restful night's sleep when you wake up every couple of hours, only having to settle back down again throughout the night. Ugh. Seriously.

And spasticity is still improved by about 75%. But I'm also taking Ampyra and I notice when I skip a dose that the stiffness in my legs reverts to a pre-angio, pre-ampyra state. So should I attribute improvements to that instead? Who freaking knows anymore. By the way, can't really say that Ampyra has helped with leg strength at all... but, it doesn't make me sleepy like other anti-spasticity meds out there so I'm probably going to stick with it.

Balance is better and I'm making gains at physical therapy. But it's important to stress that those improvements are marginal and relative to my previously sub-par level of function.   Yes, I'm walking a bit better and even taking baby steps without any assistance.  But I can't help but wonder (oh yes, I'm channeling Carrie Bradshaw): is that just a result of me wanting to try harder?  Could I have taken those steps unassisted before but never attempted it because I was convinced I couldn't?

Even if the only result of the first venogram is an unearthing of some plucky "can-do" motivation that I never possessed before... is that enough? I don't know right now. Maybe this isn't the most encouraging blog ever. But who said I was blogging to motivate others? It's just a document. For selfish reasons, at that.

I'm trying to approach Tuesday with zero expectations in the hopes that I won't be let down. I'm trying to be ambivalent. Yes, I'm still nervous and still just the teeniest bit hopeful. It's not possible to walk (or roll, in my case) in to a hospital knowing someone's trying to fix you and not hope for something, anything.

If there are no more improvements, I will stay on track with physical therapy and diet and try to figure out which (if any) drug I will subject myself to. I'm just so tired of waiting for something to work.

And, now that I think about it, I'm not so sure I'm going to post any more videos. I will film them, for posterity if nothing else. But I don't want to give anyone false hope. I could post videos of me taking baby steps without assistance, standing with my feet together and arms out to show improvements in balance, etc etc. But I'm not doing those things all day, every day. It's a snapshot of me at my best before I'm exhausted, or stressed, or had a bad day. Hell I also take a few minutes to slap on some mascara and fix my hair - that's not even accurate. Most days, I'm in my pj's and washing my face/bedhead repair is the extent of me "getting ready for work", because I work from home and don't need to dress to impress. Though it may be a better version of me, it's not real.

Sorry kids, I'm in a crabby mood today. More to come later this week or next...

Saturday, September 4, 2010

I'm 33 today

Today's my birthday.  That allows me the indulgence of waxing nostalgic, right?

Am I where I thought I would be 10 years ago? Hmmm, let's see: September 4, 2000...
I was a fresh faced newlywed, barely home from my honeymoon. I felt officially "grown up" and I reveled in the novelties of domestic life with my new husband: grocery shopping, tending to our apartment, figuring out the little day to day joys of married life. I was in the middle of my first major exacerbation. I didn't know it yet, but the double vision that plagued me for months was the first tell tale sign of many that something was wrong. But we soldiered through it, trying to (unsuccessfully) figure out what was going on with my body.

At the time, Keith and I were playing in a band called The Maccabees.  (No, not the UK dance-rock band; we picked that name waaaay before them in 1998).  The book of Maccabees is one of the books not part of the King James/protestant version of the bible, so being the lone Catholic in the band,  it was kind of a silly joke.  The band was going strong; we went on a small tour the previous summer and put out a couple of EPs.  We were talking to a small independent label called Tree Records that was interested in signing us with one caveat: tour, tour, tour.

That's why we picked our wedding date - alllll because of the potential of touring (that date, coincidentally, was also Keith's grandparent's wedding day).  As it turned out, my health problems, in combination with personal problems of other members in the band, caused an implosion and The Maccabees just kind of fizzled out. 

I graduated from college the previous December with a degree in English Literature.  I never really wanted to go; I wanted to tour and be a full time musician.  But my parents played the "something to fall back on card" and since they so selflessly set money aside to pay for my education, I didn't feel like I could blow it off.  Not that a degree in English Literature sets you on a career track for money, power and success.  I like to read.  So, that's what I picked.  I ever-so-briefly entertained thoughts of going to grad school to be a professor, thoughts that never saw the light of day.  But just having a degree opened doors for me.  I started as a Staffing Coordinator at a small staffing firm in Brandon.  And, 10 years later, I'm still a Recruiter.  It's not bad work; I can't complain.  But when I was 5 years old, I don't remember saying, "When I grow up, I want to be a Recruiter for a large market HR Outsourcing Firm!"  Not quite up there with Astronaut, Cowboy, Doctor, or Rock Star.  But it pays the bills and the set up (working from home) is perfect for me because I can still contribute to my household/society in a professional capacity and not have to a) worry about navigating outside of the house with my limitations and b) feel like a complete waste of space.

Is music still in my life?  Absolutely - 1,000%.  It's one of the reasons I breathe (aside from, you know, the whole needing to breathe to stay alive thing).  And I love that I play with my husband.  We work well together (aside from occasional times we become The McBickersons) - well enough to play in a band and run a small record label.  The label is a labor of love.  No money made there; it's only because we want to hear good music and if that means we pay to have the CDs pressed, so be it.  Of course, it's a little more involved than that and Keith handles the business side.  I'm more of an opinion/advice contributor, which is enough for me.

So, back to my birthday...  There are two significant things inextricably linked to my birthday:

1. On September 2, 1998 a good friend of mine was on Swissair Flight 111 when it crashed in Nova Scotia en route to Switzerland.  It was two days before my 21st birthday.  Jon Wilson was an amazing person.  He was the friend that fought to keep our circle of friends together, despite all of the petty silliness that comes with youthful friendships.  Every year since, our friends (it's a different hodge podge of people every year) meet at his graveside and then go to dinner to fellowship, hang out, reminisce.  Most of us are still good friends.  Some have moved far away, and we're all busy with work, kids, family.  But we always make time for September 2nd.  It's not sad anymore; we remember with happiness and tell stories about our friend.  Naturally, there will always be a tinge of sadness to the gathering, but it's overshadowed by our memories of him.  It's always good to hang out with old friends and that kind of kicks off my birthday celebration.

2. My mom went into labor on Labor Day, so my birthday is always on/around a 3 day weekend.  Score!  That's it.  Not really as significant as #1, I just felt it was worth mentioning.

I got a card yesterday from a friend with a quote from The Birthday Book.  She wrote, "You are quick, volatile and tempestuous and carry a point by force of will.  You have a keen, brilliant mind.  You like to work things out alone and are sometimes impatient in your haste to get them done.  You are a true and loyal friend."  Now, I'm not sure how I feel about dates on a calendar signifying key points of your personality (I know, I know: stars, planets, moons in houses, yadda yadda) But some parts of that are uncanny, especially the working things out alone/impatient in your haste part (and the keen and brilliant mind part, bien sur).  Am I volatile and tempestuous?  Uhhhh, not so much.  Maybe there's a Bizarro Susie born on this day on the other side of the world who sets fire to her ex-boyfriend's belongings and keys cars that park too close to her.  I am the anti-volatile: passive aggressive and non-confrontational.

And in 10 days, I will be back in the hospital.  My impatience is probably what necessitated me going back in for a second venogram.  If I'd just waited.  If I'd just had the MRV before so he would've seen what's going on inside my skull, in the sigmoid sinus - maybe I would've only had to have one venogram.  But there's really no point in wondering about how things could be different.  In contacting my doctor I've set off a chain of events that have allowed many others to be treated.  I'm a trailblazing guinea pig, if you will  And it's not as though I'm heading in for open heart surgery - it's an outpatient procedure with minimal risk.  At least I know what to expect this time around (and now I'll have matching quarter-inch scars at the top of each thigh).  But ahhh, hindsight.  It's a bitch.