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.


  1. set backs suck. big hugs & fierce growls to keep your mental strength in the days to come. please let me know if there is anything i can do, very familiar with the hospitals & would be happy to supply you with gf crackers/"bland" baked goodies basket for any post-op recovery!


  2. If there is a glimmer of light at the end of your jugular, I would say it is the willingness of your doctor to explore other options rather than dazzle you with BS. Too many times when the path isn't easy, the catheter gets pulled and that's it. $10,000 poorer and nothing to show for it but a bruised groin and crushed hopes. It's a work in progress, but the greatest potential we have ever had.

  3. Karen - I might just take you up on that...

  4. Where is my comment?!

    I wrote that you are going to kick the ass of this horrible disease. You are so strong and have an awesome support system. You can defeat it and we all know you will! Your Doctor sounds's so awesome that he is a fighter.

    Food Delivery!! I could do much better than graham crackers and ginger ale!! I'm right down the street and available 24 hours. We love you!