Thursday, July 7, 2011

On being a (disabled) woman with MS

I've been thinking about this a good bit lately, and I hope that I can express such a delicate subject matter with grace and humor.  If you know me and you're reading this, I am now making myself that much more vulnerable to you.  But if I can't be honest with you, how can I be honest with myself?

And let me also say that the purpose of this blog is not to cast a giant net in hopes of catching a compliment or two.  I'm just trying to explain what's going on in my head.  It's a mess up there.

It's one thing to have MS.  Being a woman is another thing entirely.  But a woman with MS?  Woah, my life just became 10,000 times more complicated.

Before we go any further, let's cover the basics:
1. To my able-bodied ladies: the handicapped stall is not meant to be your personal beauty salon. If there are regular stalls open, please avail yourself to one of them and then proceed applying copious amounts of  lip gloss/get that one hair that won't cooperate in place/double check how your butt looks in those jeans in the "common area" of the bathroom.  If I have to go to the bathroom and you're playing Miss Fussy Pants in front of the mirror in the one stall I can actually get into, that's not cool.  I need that stall so I can wheel right in.  And those grab bars aren't there for ladies who are too drunk to pull themselves off of the toilet but rather so us 'cappers can get our wobbly asses up without falling on a dirty bathroom floor.  I understand if you have small children to corral or there are no other stalls available.  If that's the case and you need use the bigger stall: make it quick. Please, and thank you.

2. Handicapped parking spots are not in place for you to run inside real quick for <insert random Saturday errand running here>.  Don't do it.  It's not cool.  Your legs work, make it happen.

3. If you have a tag please hang it!  Or I will consider you to be just as inconsiderate as everyone else and  leave a lovely business card that I had printed up special for the occasions of douchery when someone parks with out a tag.

4. Don't stare.  You only make yourself look like an idiot. At least to me.

5. Dressing rooms: see #1.  Insert changes where needed.

Sorry, just had to get that out.  I'm ready to move on now...

Let's face it, whether or not it's a satisfying revelation: we are all judged by our outward appearance.  When you see me rolling towards you in my Pride Go-Go Elite 3 wheel scooter, that's the first thing you see.  It doesn't matter that I've maintained a  weight loss for over four years, that I just got my hair cut or am wearing a super cute outfit.  Don't shake your head.  You know it's true.  And unfortunately I, like many women, base a portion of my self worth on other peoples' perceptions of me and how I look.  We all do it to varying degrees because it's impossible not to.  As I've gotten older/become disabled, I've started to care a little less about what people think of me.  It's still a compliment when someone tries to flirt with me (note to my husband: no one flirts like you do), as rare an occurrence that may be but really, who would want to?  I've got a truckload of baggage hidden just around the corner- literal and figurative.

Scooter aside, I want to be desired and desire someone- to receive love and give it in return.  It's innate, isn't it?  We all have our hang ups. I have spent most of my life as a self-dubbed chubster.  Even my current neurologist categorized me as "borderline obese" in his notes from my first visit in October of 2002.  In my brief stint as a Girl Scout in the 4th grade, Sears had to special order my uniform in the "Pretty Plus" size.  High school was no fun either.  Someone made fliers with my yearbook photo on it that read, "Have you seen me? If so, please call 1-800-FAT-COW".   No lie.  It's an understatement to say I have self-image issues.

As the years have gone by, I've actually shrunk quite a bit (-25 lbs in 2000, - 25 lost in 2009 and -10 lost in 2012) but in a cruel twist, my disabilities have gotten worse.  So it's basically a wash: trade one insecurity for the other.  I'm pretty close to a waddle when I walk and that's only with a walker in front of me.  Not sexy.  Just, no.  I want to buy cute clothes and show off my smaller bod.  But it doesn't really matter, in my opinion. I'm usually seated either in a wheelchair, a scooter, or a chair and I don't think anyone is looking at my clothes.  And that's my sad little perception.

Am I thankful my husband knew me before I became this version of myself?  Absolutely.  It makes me a little less self-aware when I'm trying to get down the hallway.  We laugh about it a lot.  To clarify - he's not laughing at me (most of the time at least; but some of the time, it's totally called for) and I've been able to formulate a brand of self-deprecation that is just shy of being pathetic.  But it is nice to be reminded of how it felt to be "normal", whatever that is. Even though this is pretty much my normal now, no matter how hard I try, I will always see myself differently.  I was even on a kick for awhile of refusing to be in my scooter or wheelchair while someone was taking a picture of me.  I didn't want a permanent document of something I've lost.  Now? It's slightly better, but pride still gets the better of me from time to time.

Laughter is one of the most precious commodities in my marriage.  So much so that I can't place a value on it.  But it's so much more than that. There's an ever-present intimacy that cuts through any potentially embarrassing moments.  We laugh (I know I already said that, but we laugh everywhere - in the bedroom, too) at my physicality, or lack thereof.  That takes a level of comfort that, quite frankly, I never thought I'd possess.

In any relationship, especially a long term one, there is this sort of dance filled with nuance that you have to choreograph and nimbly execute or you wind up being at risk of losing what makes you such a great couple in the first place.  We aced that test and continue to.  Suffice it to say that living with MS has muddled it all up by putting both psychological and physical road blocks that inhibit me from expressing myself the way I want to. Still, we make it work.  Really well.  And that's all I'm gonna say about that.

I was a Catholic girl - still am.  I wasn't necessarily an angel when it came to the inevitable indiscretions of dating cute boys but there was one line that I refused to cross.  So my wedding night was the epitome of a rite of passage.  I felt different after, entitled.  Fast forward to a year and a half later and my ability to enjoy one of the few things it felt okay to enjoy started to slip from my hands - try as I might to hold on it.  I was angry.  I was terrified, in fact.  This new part of me that I'd been celebrating was changing right before my eyes.  I had just gotten comfortable with the fact that it was mine and I was owning it.  I didn't didn't want to think about turning my ideas of love and sex on their respective heads.  And definitely not in the lame, National MS Society pamphlet way of defeatist rationalization, something in the vein of: "sometimes, just laying with someone can be satisfaction enough." Bulllllll shit.  Anyone who hears that and tries to accept it is doing a really weak, half-ass job of consoling themselves.  Yes, cuddling is nice.  But there's a lot of things that are way more fun than a cuddle.  I mean, come on.

There are parts of my body I hate.  I think it's fair to say that everyone feels that way.  But, add in a blaring insecurity about how I look when I walk/the way I move/all of the bummer side issues that are a part of living with MS (pee issues, muscle spasticity), injection site bruises, incision scars... I will spare you the laundry list of boo-hooing and just say that it's never been easy and the past 12 years have been that much harder.

There are things I like about my body too.  I like the way my hip curves into my waist when I'm lying on my side.  I like the delicate swerve of my collarbone and the sweep of my neck to my shoulder. I like how my hip bones jut out when I'm laying on my back (Weird one, I know.  Air fist pump for weight loss in 3...2...1: GO!).  There's a landscape to my body that I can appreciate now more than I ever could.  MS has nothing to do with that.  But that's ok. I'm still a woman and want to be reminded of it. And I am. Thank God for that.

Sunday, June 19, 2011


Last year on Friday, June 18th I had my first venogram to treat CCSVI.  Exactly one year to the day (Friday, June 17th, 2011) I had my fifth and possibly final venogram to treat CCSVI.

It was originally scheduled for Friday, May 27th but due to an equipment malfunction at the hospital, I was rescheduled for 3 weeks later at another campus-the same campus I was first treated.  After the fact, I realized the significance of the date.  I didn't want to put too much weight on that coincidence, in case that's all it was.  We know where that road leads: disappointment, depression, sad Susie.  But, my little optimistic heart just couldn't ignore it.  Which only led me to where I am today... sad Susie.  I don't like this version of myself.  But I have to let these feelings to peek through - even if for only one day.

There is some sick part of me that actually enjoys checking into a hospital.  It's not like I have some kind of freaky masochist lurking beneath my chipper veneer.  It's the comfort of knowing there's a team of people there just for me - even if only for a few hours.  Doting on me, checking my vitals, offering me empathy and words of encouragement.  I hold on to it because it helps me remember that I'm not trying to figure all of this out by myself.  And as a whole, this past year has been a flashing neon sign reminder of that.  My doctors, my physical therapist, the nurses -everyone- have been awesome.  Let's not forget my husband, friends and family - they're that constant kind of awesome that's easy to take for granted.  But having a doctor say that he will never stop trying, that's a rare kind of commitment and is appreciated more than I could ever adequately commit to words.

On to the details:  IV in, foley catheter in (better safe than sorry, but lawd, it's uncomfortable).  The anesthesiologist stopped in for a visit and let me know that because of where Dr. M was going with the catheter wire (across the veins in the back of my head) they might want to put me completely under so I wouldn't move my head around.  Which would mean a breathing tube and everything.  shit. Then Dr. M came in to visit and fill out an H&P - and now I know that stands for a history and physical.  Just a bunch of questions... and by about 10 am I was back in the radiology suite.  

I remember the anesthesiologist telling me he was going to start the Propofol and then two seconds later (it seemed) I was waking up in recovery.  Thankfully, they didn't have to put me completely under.  No neck brace either, which meant no stent in my left jugular - which was the goal.  The whole point of my visit, in fact.  Then I heard the nurse talking about continuing the Lovenox so I had a spark of a thought that maybe they just hadn't put the brace on yet?  Not sure of what had happened, I dozed off to sleep and waited for some news from Keith who had no doubt already gotten a full report from Dr. M.

Here's what he found:
This is my left internal jugular - see where it's all fat and then just kinds of winds its way into nothing?  And then it's picked up by a collateral vein (that my body created to help accommodate the lack of flow, which I still find amazing).  He tried every which way to get into the occluded portion of the vein but it just wouldn't budge.  As stubborn as me, I guess.

Now, here's where you can see a huge difference (17.54 mm wide).  Here's the right side, which was mild-moderately stenosed at the bottom:

And here it is after he ballooned it:

The good news?  My azygous vein, that was stented in February, is looking good.  There's a little bit of hyperplasia, which is just a build-up of cells in the vein wall - a way of my vein fighting back against the stent, I guess.  But he was able to balloon that and treat a small amount of restenosis he found:

You can see the stent on the left side, it looks like a shadow.  Here's a lil' movie, too, that shows the blood flowing nicely in that vein:

No, it's not all bad.  But the one thing I was hoping to fix is still as bad as it was before.  It's nobody's fault.  I have diseased veins.  I just feel like I'm settling. I want to ask "why?":  Why do others get so better and I've only had marginal improvements?  Why can't we get that open?  Why does 2 outta 3 have to be enough for me?  It's not.  I want more.  

But on the other hand, I wasn't sure how I felt about a stent in my neck.  The recovery would've been longer, and more uncomfortable.  Though I am still recovering.  I have a nagging headache and my neck is sore, all around.  He made sure to double up on the incision with dermabond AND steri-strips so hopefully I won't have the bleeding problems I did last time.  And I'll only be on Lovenox for another week or so then it's down to Plavix or Aspirin.  Maybe Pradaxa istead.  

As the nurse was escorting me to the discharge elevator, I had to stop and use the bathroom.  I heard a conversation outside - and when I opened the door, the nurse said, "There's someone here to see you."  Dr. M had come to talk to me and I almost missed him.  He went through all of the details and though I was still pretty groggy, I remember that he seemed pretty disappointed.   He had to get to another case, so we said goodbye and I was just able to hold back a cry as I spun around and headed in the opposite direction.  I took a deep breath and told myself to keep it together.  I refused to allow that disappointment to sink in like it had before.

So, what now?

I was talking to my mom about it and she said, "Now you can put this all behind you and move on."  Um, no.  It's not like I went through a phase.  I didn't dye my hair pink or date a biker.  I can't just pack up a box, label it "CCSVI", put in the closet and open it up every once in awhile to reminisce.  I have a permanent piece of mesh in my body keeping one of my veins open.  And 3 starclose devices just under my skin at the top of each thigh.  Not to mention a total 5 or 6 incisions.  But let's forget about the physical reminders and talk about how much I've changed as a person the last 18 months.  I've empowered myself with knowledge and the confidence from learning that I can change the way my life plays out because I have a degree of control over my health and how I choose to treat my disease.  

And this probably won't be the last venogram - the stent will have to be checked on every once in awhile. I'll also need to keep close tabs on my symptoms in the event that I may need to be re-plumbed.  There is also talk of venous bypass - major surgery.  When Dr. M was rooting around on Friday he found a vertebral collateral vein that he's sure would be a good vein to use for bypass.  We're going to see how I'm feeling and then possibly set up a consult with a vascular surgeon at St. Joe's to talk about possibilities.

For now, I'm stable.  I've been off of any/all MS disease modifying drugs since July of last year and I'm just a week shy of a one year drug-free remission.  Plus the four years of remission prior to that thanks to Novantrone.  It would seem to me that just diet and angioplasty have been doing the trick. So if I ask myself again: what now?  Stick with the diet, get back to physical therapy as soon as I have the green light, live my life - limitations and all.  I've got to keep moving forward and I will allow myself a glimmer of hope, even if it breaks my heart every once in awhile.  My parents were over last night and my mom told me that people are drawn to me because of this light I have inside - it's got to be hope.  I can't explain it otherwise.

Sunday, March 6, 2011

I'm still here.

So it's been just over a month since venogram #4.  How am I feeling?  Good.  Not great, good.  And as I type this, I remind myself that there's still one area that wasn't treated: my left IJV.  It would seem that I continue to run into all these little caveats that relentlessly jolt me up and down between hope/expectation and fear/disappointment.  Though I will say that compared to the way I felt about this last year, my approach has certainly... mellowed.  Not to say I haven't had let downs or scary moments.

The three major improvements after this last go were: less spasticity, little-to-no leg twitching, and sleeping through the night.

  1. Spasticity is back.  This has happened before and I'm personally convinced that it's related to the sedatives/anesthesia.  I'm not a doctor, and I don't play on on t.v., so there you have it.
  2. Leg twitching is better, but last night it bugged me when I tried to go to sleep and only stopped if I was laying in a certain position.
  3. I was sleeping through the night and then I got sidelined with a UTI earlier this week - which meant I was getting up to pee all night long.  It's getting better as the antibiotic does it's thing. But I had a mini freak out and convinced myself I restenosed, until I started to feel better.

And while we're on the "how am I feeling" update, here's how today has gone so far:
This morning I woke up and noticed that my legs were buzzing more than usual.  I had another mini-freak out because that's how they started to feel when I restenosed back in late November - but then I remembered that it was more of an electric shock type of sensation than a buzzing. So, I'll live with it and "wait and see".  If it gets worse, I'll let my doctor know.  The end.

Then I got out of bed, walked into the hallway (with my trusty walker, affectionately dubbed Walker, Texas Ranger) and turned on my heel to close the door.  Um, half-awake with slippers on hardwood floor?  What a dumb thing to do.  I fell hard on my bum and my back hit the wall.  Poor Keith shot up out of bed repeating, "Are you ok?!" over and over again.  Man, he is quick on his feet - he jumped out of bed and helped me up.  So what do I do - freak out?  No.  Let it ruin my day?  Nah.  Feel like an ass? Yes, most definitely.  After busting it on my hardwood floor, I dusted myself off and made my way down the hallway.  To my husband: I'm so sorry; what a horrible way for him to wake up. That kind of fall jars you on the inside, too.  I fell so hard I felt nauseous from the hit.  I don't see how mulling over it all day makes it any better. On I go...

Back up to Friday: my left pointer finger and thumb started to go numb.  Then it creeped over to my right pinky and ring finger. It's come and gone at will  What's this about?  I haven't had numbness or weakness in my hands for... 7 years. maybe longer?  It could be stress related - this weekend was physically and emotionally exhausting.  In a good way, but still.  After all of this craziness, I actually have an appointment with my neurologist tomorrow (coincidence, nothing more).  He was opposed to CCSVI but now he's on the fence.  Actually, he spoke at the symposium on Friday.  Too bad he had to leave early.  It would've been cool for my two doctors to meet.

That's where I'm at right now.  I don't want to micro-manage my symptoms.  I mean, its not like I can completely ignore it because I'm feeling (or not feeling) symptoms happening in my own body, all day.  That's what I was hoping for when I started the whole campaign to get treated last April, to forget that I have MS.  I'm not done with it, not by any means.  But this last trip to the hospital was a little more intense.  6 hours on the table - with anesthesia, to boot.  Took me a good two weeks to bounce back.  And then I had trouble with one of my incisions - that, thanks to blood thinners, continued to bleed long after it should've subsided.  And that sent me back to the IR department for a couple of stitches.  That was my first experience with stitches - not so bad, until the anesthesia wore off.  The thought of someone sewing my skin together just skeeves me out.  Luckily, the PA was great and the nurse that came in to visit (yes, that's how well they know me) kept me happily distracted.

I cannot tell a lie: sometimes I feel a tad in over my head.  This is just way more complicated than I thought it would be.  But, I will continue.  I have nothing to lose.

What's next?  With the blood clot in my left ijv making it nearly impossible to get in and open the vein up, I've been on a regimen of Plavix and Lovenox in hopes of breaking up the clot.  I'm scheduled for ultrasounds for every three weeks until May.

Some good news:

The report from an ultrasound on 2/7/11 reads:
IMPRESSION: No progression in previously seen thrombus within the mid portion of left internal jugular vein.

The 2/17 report reads:
IMPRESSION: Partial thrombosis of the distal left internal jugular vein, which appears improved when compared with the prior study from 2/7/11.

The clot is breaking up!  Quote from the (previously mum) ultrasound tech: "This is remarkable.  I've never seen anything like this!"  Prior to the 17th, when she tried to compress (press down on my neck with her fancy wand) the vein, it didn't budge because the clot was so big.  On the 17th, it actually gave way.  I told her it was a combo of blood thinners, prayer and mental visualization.  Hey man, whatever works.

Dr. M wants to try a venogram in a view months to see if  he can get in the left side, depending on how the clot looks.  And depending on what happens then, there's talk of a consult with a vascular surgeon for a venous bypass.  Basically, a portion of a vein from my leg would be moved up to my neck and used to bypass (duh) the bad portion of my vein.  I've done a little research and spoken to a doctor or two and historically, there's been a very low success rate with this type of surgery.  And, it's surgery: major- anesthesia-with-a-breathing-tube-out-cold-nasty-scar(s)-with-a-long-recovery.  Not sure how I feel about that yet.  I'm playing the "wait and see" card on that one, too.  I need a little more time between visits to the hospital, for crying out loud.

This post is a little more morose that I wanted to be.  There are a lot of good things happening in my life.  Most importantly, the past two days I attended the CCSVI educational symposium here in Tampa at Moffitt and the 1st annual CCSVI walk.

The symposium was good - very informative.  And the walk was a great opportunity to meet CCSVI Facebook friends - some that I've been talking to online for almost a year.  I wish that my doctor had been recognized for being the first treating doctor in Tampa.  I don't want to diminish all of the fantastic work that Dr. Arslan has done and I don't my doctor shoved unwillingly into a spotlight.  I know it was a Moffitt party - I totally get that.  And also, I want to be crystal clear: this is not an attempt to curtail all of the time, effort and energy of the people that worked so tirelessly to organize both events. I just think that as a community of doctors working towards the same goal, there could've been a little more collaboration.  This is just my opinion, not my doctor's.  It's hard to not have an opinion about something you're passionate about.

On the non-CCSVI front (wait. that exists in my life?), there are other really exciting things going on, too.

My husband and I getting ready to take our 3rd annual trip to Austin, TX for SXSW.  Our little record label, New Granada Records, has an official showcase AND a day party with one of my top five favorite bands (Versus) of all time playing.  I am beyond stoked. '09 was great, '10 was even better, but I think this year will be the best yet.  Austin will be buzzing with 2,000+ bands - music playing everywhere: on street corners, flatbed trucks, patios, bars, parking lots, churches, hotel lobbies.  I think it's just what I need right now.  We'll be there in a little over a week and I can.not.wait.

And the album I've been working on with my band since July of last year is finally in the mixing phase.  7 down, 10 to go.  We don't plan on putting out a double album - but we will cherry pick the best songs.  What a luxury - and then we'll have leftovers for EP's, 7-inches, etc. Joy!

I was hoping that I wouldn't have to take my scooter this year.  Walker or cane?  Sure.  Was that ridiculous expectation?  Maybe. I'm allowed to be hopeful.  I hang on to that.  It keeps me afloat.

That's the rub.  G'night.

Saturday, February 5, 2011

1 outta 2 ain't bad

February 3rd, three weeks later, and I was back in Interventional Radiology. Is it sad that the nurses know me by name? Haven't decided yet. (On a side note, what a lovely bunch of ladies. They all take such good care of me! Keith can do without the small talk but I find it soothing - it's a nice distraction.)

Dr. Montague came in to talk to us before they wheeled me back. I gotta say, I wasn't feeling too hopeful after our conversation. I remained, as always, cautiously optimistic but we all knew that the odds were stacked: my left internal jugular vein was almost completely occluded - save for a small crescent-shaped opening, with a blood clot right above it and my azygous vein was just as bad (minus the clot) AND harder to get to because of its candy cane shape. I had a MRV last week of my pelvis and abdomen so Dr. M could "map out" his approach to my azygous vein. I like to think of my veins as little highways and he was just planning a road trip.

Before I knew it, I was being wheeled back to the suite for venogram #4. I just noticed last time that it's called a suite - I like it. It sounds less sterile and hospital-y - less bedpan/more breakfast in bed.

Here's the awesome part: Propofol. There were a few more people in the room this time- the Anesthesiologist and his assistant. They had their own set of monitors and machines that most likely bleeped and blooped, but I was blissfully unaware of any of that. This is what I remember: "Ok, I'm starting the drug now." I think I blinked 3 times and that was it. I woke up in recovery.

I knew something was up because I kept asking for a collar for my neck (he prescribes them for anyone that gets stents in their jugular veins) but the nurses told me that he didn't order one for me. Crap.

Time seemed immaterial - blame it on the drugs. Then I saw Keith's sweet face. What a relief to see him. I got a little teary when he left the room earlier that day and was so happy to have him close by again.

He did his best to sum up what Dr. M told him after he'd finished up, but it's a lot of information to digest. He did say that he came out to talk to him with a smile on his face, which is always encouraging.  And after a little while longer in recovery, the good doc came to talk to us. So what happened?

Well - no stent in my left IJV. It was just too stubborn, though he tried and tried.
Here's what it looked like:
See all of the veins that look like curling ribbon?  Those are collateral veins that my body created to help accommodate the blood flow not able to get through my jugular.  And at the very bottom, it just stops - that's where the occlusion is.

He also had to balloon the right side again - it had just barely restenosed.  But not bad enough to stent.  Also, he didn't want to stent my "good vein".  In this picture, you can see how gigantic it is from trying to handle all of the blood flow not coming from the left side (that's a big sucker, especially compared to the left side):

Here's some video of my azygous vein before (you can see when the dye is flushed and then it just disappears; that's where the occlusion is):
 And here it is after - the blood flows nicely from end to end:

Does the stent hurt? It's uncomfortable, to be sure.  Let's just say it feels like I walked into a pole and it hit me right in the middle of my chest.  Not unbearable, but I could do without it.  The incisions hurt more than anything else(and they look pretty gross, too. ew). Overall, I'm sure I look like a mess:
  • bruises from IVs, blood draws, and at the incision sites - yes, 2 incisions for two sheaths
  • tummy all bruised from the (now twice daily) Lovenox shots I'm giving myself  
  • sticky goo from all of the heart monitor electrodes and bandage tape in places I can't reach
  • black x's on my feet from where they marked my pulse points with marker (that I can't scrub as hard as I'd like to just yet - it hurts to fold myself in half to reach them)

I'm not quite back to where I was before I went in, so it's hard to say if I'm feeling better.  I mean, six hours under - I'm going to need a little extra time to bounce back.  Dr. M, bless his heart, was so excited that he'd been able to get in and stent my azygous vein.  And how lucky am I for having a doctor that wants to try so hard?

After a few more months of blood thinners, he wants to give the left IJV another go.  It was silly for me to ever think this would be a one time shot.  He also spoke to a vascular surgeon about a venous bypass - which I'll only consider after all other options have been exhausted.

What's left now?  I'm just going to wake up every day, see how I'm feeling and take it from there.  I could obsess but honestly, it's just too exhausting.  I've known about CCSVI since November 2009 and have been seriously investigating treatment since April 2010. I think it's time to take (at least) a month off and concentrate on the rest of my life.

I was hoping to be recovering from two stents instead of just one. BUT one is better than none; how can I complain?

I think God is trying to teach me patience. Though I am a reluctant student, I'll give it a go.

Friday, January 14, 2011

Third time's NOT the charm

Yes, I'm way overdue for a post.
Yes, I have a million excuses.
No, I'm not going to give you all of them.

The short version: I restenosed. About one week before Thanksgiving, I caught a terrible cold. My legs got super-stiff - I was doing my best Frankenstein impression and from then on it was a trickle of old symptoms rearing their ugly heads in a piece meal fashion. I don't think I'd realized how much better I'd gotten until everything started to come back.

The cold turned into an ear/sinus/throat thing and before I knew it Christmas was right around the corner. I emailed my doctor to tell him about the changes and that, though I attributed it to my cold/upper respiratory mess, I still wanted to let him know. He ordered an MRV to make sure everything looked ok.

It didn't. In fact, it was worse than it'd ever been.

Here's the left side - completely occluded (remember, the sides are flipped on MRI films):

Heres's the right side - worse, but not as bad as the left:

And lastly, the azygous vein (point of view is a horizontal slice of my chest looking from the top down).  It should look like a "U" or a horseshoe but it is almost completely closed off, too:

Test was on Monday, the 27th and we met with him that Thursday. All three major vessels had aggressively restenosed and would need stents. The left internal jugular vein was the worst - having developed something called intimal hyperplasia. Basically as a response to the increased blood flow or some kind of trauma, sometimes veins react by thickening their walls with extra layers of cells. It's just part of the package when you're diagnosed with venous disease. In laymen terms: my veins are stubborn little buggers.

He wanted to get me back in for a 3rd venogram and before I knew it the day was upon me: this past Wednesday, January 12th.  He warned me that the left side was so closed off he might have to come from above it by making a small incision for a small catheter.  In my neck.  Gotta say, that freaked me out.  And I've been anti-stent this whole time.  But after speaking with him about it and fully understanding the risks, I decided to go for it.  I felt backed into a corner - not by him, or anyone else.  Just blame it on my alarmingly screwed up body.  He looked so defeated and apologized several times.  I know it's not his fault and I asked if it was due to anything I did or didn't do.  His answer: "Absolutely not."

Got to the hospital at 9 to prep for the procedure, which was scheduled for 10 am.  Coincidentally, my friend was the first case of the day at 7:30.  So, provided everything was running on time, I was good for a 10 am flight to fuzzyville thanks to sedatives and pain relievers.  I felt so calm this time around, like everything was going to work out beautifully.  Um, yeah.  That's pretty much the complete opposite of what actually happened.

After all of the prep - IV, catheter, vitals (Yes, I got a catheter.  Horrible and uncomfortable at first but what a relief to not have to worry about what to do if I needed to go to the bathroom - bedpan?  No thanks, I'm good), it was about 10:15 or so, which was already past the time I was supposed to be in the cath lab.  Hmmm... they're taking their time which means there's no rush to get me on the table. I waited in pre-op until about 1:00.  I knew ahead of time that my friend's case may take a little longer.  She has persistent disease just like me.  I didn't mind waiting because I knew she was being taken care of.  I just wiled away the hours  flipping channels and waiting for my curtain call.

Finally I was wheeled back to get things started.  I still felt very calm, and even more so when I heard this song coming through the speakers from one of the three CDs I made of the most soothing music in our collection of 1300+ CDs.  Then it was all vaguely familiar to me: transferred to the table, strapped in, loads of sterile draping, sterilization, oxygen cannula etc, etc.  This time, the doc came in to do a quick ultrasound of my neck in case he needed to get in from above, like we talked about.

The nurse started with the sedative and I heard the familiar phrase, "Quick bee sting" coming from the doc to let me know he was numbing the incision site at the top of my thigh.  This time around was, by far, the most lucid I've ever been.  And I knew that something was off because there was a lot of rooting around but no ballooning.  He tried to get into my left ijv from the bottom - no luck.  He went in at my neck - no luck.  He tried to get to my azygous - no luck.  He even hunted for a better way to access the azygous via the ascending lumbar vein - no luck.  Finally, he ballooned the right ijv and even a collateral vein next to it that had also stenosed.

How long were we in there?  Oh, about 4 hours I think.  So long, in fact, that the Lidocaine shot wore off of the incision site and I could feel the wire/incision so he had to give me another dose.  Not incredibly painful, just uncomfortable.

I remember talking to him during the procedure, asking where he was.  And I remember asking them to put another CD in because they played the same one twice (I'm good at recognizing minutia even in a semi-conscious state).  He talked to me when he was done and explained everything he did.  It's all mixed in with what he told me the next morning.  I just remember this hulking figure (he's really tall) suited up in scrubs, gloves, a cap, a lead apron, and plastic safety glasses telling me everything, resting his hand on my arm reassuringly.  It didn't sound reassuring.  But you can't say he didn't try.  It's got to be frustrating, as a doctor, to not get the results you're hoping for. Certainly different from how the patient feels - on an entirely different level.  I have mad respect for him and I appreciate everything he's trying to do ("appreciate" isn't the right word; it's not impactful enough - it under-describes what I'm trying to say).

I hung out in the lab with my nurse while we waited for a bed to be available in recovery.  I knew it'd been a dismal failure and I was beyond disappointed.  Naturally, the tears came.  I am such a crybaby; I wish I could just suck it up sometimes.  I was physically and mentally prepared for something else.  I was ready for stents.  Above all, I just wanted to feel better.

So I get up to recovery and as soon as I see Keith I start to cry again.  Dr. M came out and talked to him afterwards and he filled me in as best as he could.  It's a lot of information for anyone to process - but if you've been in a waiting room for 8 hours it's got to be even harder (it was now about 5 or 5:30 at night).  Let's add this to the mix:  a lady two beds over moaning like a low-pitched fire truck (uhhhhh-OHHHHH-unnnhhhhhh) followed by an "Ay dio Mio"  sprinkled every other round.  It wasn't funny.  I just wanted to sleep.  In between my eyeball faucets turning on and off, of course.  The nurses kept asking me if I was in pain, checking my vitals.  I wasn't in physical pain.  I was kind of heartbroken.  And effing starving.  I was served graham crackers and ginger ale (chock full of things I'm not supposed to eat like gluten and sugar): dinner of champions.

Dunno if it was a combo of mental and physical exhaustion plus lots of contrast die/Dilaudid/Fentanyl/Versed plus the fact that I'd been laying down for 8+ hours but as soon as I sat up I got the "clammy-all-over-cold-sweat-holy-crap-I'm-gonna-puke feeling".  That was fun.  I hung out for a bit longer but I was just ready to go home.  So after 1 1/2 hours I slowly got dressed and set out for patient pick up with a nurse as my escort while Keith went to get the car. I even got a special cup for pukin', just in case.

We got home and crashed (shocker, right?).

Called the doc the next morning and the summary of our conversation goes like this:
  1. Left ijv so tight, wire went through vein wall (not uncommon or anything to worry about) - what appeared to be intimal hyperplasia on the MRV is actually a blood clot.
  2. Couldn't access azygous
  3. Right side is accommodating 75% of blood flow and collateral on right is almost as big as jugular
He wants to get me scheduled 3 weeks from now for another venogram.  This time, I'll get anesthesia (Propofol - the infamous "Michael Jackson" drug).  He wants to try to get to the left side by going up the right, over the veins in the back of my head and down to the left.  And he wants an MRV of my abdomen and pelvis beforehand to map out how he's going to approach the azygous.

Famous last words: "We're not done fighting this."

Now I just feel like I've been in a terrible car accident - head, neck, torso are all super tender. Guess that's bound to happen when someone's been foraging through your insides to try and fix you. I have two incisions to not scratch and about 3 weeks of Lovenox injections.  And before I know it, I'll be back for #4.  Fourth time's the charm?  I'd like to think it will be.