What, done so soon?

Hello there,

Karee is still sleeping off the anesthesia as I write this, but she's doing so in the comfort of her own bed.  A very welcome place to be!

So the quick story is that today was a very good day!  They don't know exactly why, (really, they don't have any freakin' clue why!) but her stenosis is much much better.  When last her stenosis was examined, it was red and ugly, and blocked 40-50% of her airflow.  They expected that it would recede some, as that is normal scar tissue behavior.  They did NOT expect it to recede as far as it has.  Karee has about 90% of a normal airflow, which is an absolute home run for her according to the doctors.  We even have pretty pictures to prove it!

Ideally the above opening would be a perfect circle. The stenosis is the crescent kinda shaped tissue from about 4:00 on the lower right to 9:00 on the middle left.  Notice however, beyond that, a huge opening into the trachea and beyond.  Yay!  Plus, the tissue looks healthy, or "quiet" as we've come to think of it.  They weren't really sure what that white 'zit-like' thing is, but they weren't worried about it.

Now, I can't guess at how far across that is(appreciate that this photo is a hefty magnification of the real thing), but for perspective keep in mind that when the stenosis was first discovered, it left only a 6 milimeter opening at this point.  I would guess this is 12-15mm across?  I dunno (somehow tracheal diameters were only glossed over while doing my master's degree in music - I want my money back!) but it's waaaaay bigger than it was, and it's absolutely a healthy size.  Boo Yah!

As for the bronchials, well, the good news just keeps coming.  Going in we didn't know if we'd see angry tissue (it was pretty darned angry last time we looked) or even worse, new web scarring over the entry to either bronchus.  The pictures I was given are not as large so after scanning it's a bit blurry, but it's still worth pretty close to a thousand words...

What we can see here is an absolute absence of new scarring (yay!) which is a big deal.  The tissue at the top is still angry, but not as angry as it was.  They did not try to pick anything away, to allow healing in progress to continue.  They also explored further into the lungs and for once, they saw nothing exciting.  Woohoo!  As I've mentioned before, we don't want to be interesting/intriguing any more.

So, the docs in question are really really pleased with what they see.  At this point, there's no need for surgery (no need to "heal with steal"!) and we certainly hope it stays this way.  The entire episode remains, in doctor lingo, "idiopathic".  "Idiopathic," I have been instructed, means, technically "we have no idea what the &!@$% is causing this." We would rather know what happened, but we're pretty at peace with knowing that it's improving remarkably well. 

Karee is pretty dozy at the moment, and her mouth hurts - they went in and out of that cavity quite a few times today with different equipment, so she's just plain sore.  And her throat too.  Not feeling like a million bucks yet, but incredibly relieved to be able to be cautiously optimistic that this ride is nearing the end.  We kept our arms and hands inside the car at all time, and we're hoping to depart safely at the station!

Thanks so much everyone - for all the kindness, prayer, good mojo, and all the different types of support you've given so freely.  You can never know how much it has meant to us!

Peace, love, and all the good stuff.  Look for another (hopefully boring) update in December when they take another look!

Steve and everyone else around here!

Ding Ding Ding - Round 3

Hi all,

Folks have been asking about my dear wife lately, and while there hasn't been a whole lot to discuss, that's starting to change...

First of all, know that Karee is really doing pretty darned great.  We've been exercising almost every morning for 45 minutes to an hour, either riding bikes or walking.  It's been great - plain and simple.  This is totally new for us, we've never been able to do this, but now we leave the kiddos at home still asleep and we can get out and go.  It's great!

Now, to the current medical situation...  8 days after the trachea shaving, the old E.N.T. said it was still clean and clear.  2 weeks after that however, our new E.N.T. saw plenty of scarring return.  I believe he said her trachea was 40% blocked.  That was not good news.  Karee doesn't feel it much/most of the time.  However, a couple of times a week she'll be coughing something up and it will get stuck at the stenotic (scarred) area, and she can't talk for 5 minutes, sometimes longer.  That's a bit of a drag to put it mildly...

This Tuesday (2 days from now) Karee will go in for an exploratory procedure.  They'll put her all the way under and they're going to take a look at everything there is to see.  Our new E.N.T. will be the head doctor in the room, but our pulmonologist will also be there, as will our good friend and E.N.T. Tyler.  Things they're looking for:  how 'bad' is the scarring in the trachea?  Could it be that it has stopped at 40% blockage or even receded from there, and perhaps (maybe??) we can just leave it alone and she'll be fine?  Or, is she a candidate for a cricoid-tracheal resection?  This is a possible end point that all 3 of our docs have mentioned, but it's not very exciting from our perspective.  In that procedure they will go through the front of her neck, cut away the scarred area, and then reattach the trachea.  I keep envisioning my sloppy cutting through of plastic kitchen piping and then reattaching with the 'O' rings ala Home Depot.  Perhaps not a great analogy to foster?!  Anyway, they will be deciding if this is a good route to take with/for Karee.

Oh, to back up a step, the new E.N.T. after initial observation of Karee's stenosis, was convinced it was some sort of auto-immune disorder, and ordered a huge blood draw.  8 or 10 vials of blood later, we know that she is really very healthy, no positive indications for auto-immune ANYthing and bla bla bla.  They are collectively scratching their heads on this one.  Apparently her case has been presented at a few conferences, and the smartest guys in the room are left scratching their heads.  Ooooh, I just love a woman who's an enigma, don't you?  Well, maybe not in this case!

Anyway, we also are looking forward to hearing what's going on with Karee's lungs, hoping to hear that they look healed and healthy, with no new scar tissue forming.  Hey, a guy can hope, can't he?

Current bottom lines:  Somehow, surely, the stenosis and the scarring over the entrance to the lungs is connected - it seems too random for them to be not related, BUT, they don't know of any pathology that would act like this... 
We've had 3 smart doctors say that the cricoid-tracheal resection would really 'fix' the trachea situation, and I guess that bodes well, but from the cheap seats I don't understand exactly how it could 'fix' something where they don't understand the actual cause.  What if they do the surgery and it still comes back?

We'll cross these bridges as they come.

While the situation is reasonably complex, and at least mildly frustrating, please don't think that we're spending our moments wringing our hands and worried about it.  Not the case!  We're enjoying summer with its change of pace, some exercise, camps for the kiddos, a Canada vacation on the horizon...  Life is good!  We're blessed with wonderfully caring family and friends, colleagues and students.  We're in a good place, we're just looking forward to getting past this one teensy thing!

All for now, keep us in your thoughts and prayers Tuesday, 1:00pm Mountain Time!

Steve (and Karee and the kiddos too)

Well, that was nice while it lasted...

Hi all,

Well, it was nice being a boring patient for a week.  We met with the E.N.T. today, and he took us out of the boring patient category, and back into the "we're not quite sure why this is happening" category. 

He sent the excised tissue off to pathology and he had expected to see straight up scar tissue and inflammation.  Those were present in the pathology report, but there were also granulomas present.  If his original diagnosis was correct and complete, there would be no granulomas.  So, he thinks it is 'sarcoidosis' which is an auto-immune disorder.  The pulmonologist, who we have not seen since the procedure a week ago, apparently does not agree with the diagnosis. 

The E.N.T. (who shall remain nameless in this blog) is sticking to his reflux diagnosis and is telling Karee she absolutely needs to be on that medication, (proton-pump inhibitors, or PPI) likely for the rest of her life.  We would beg to differ.

From our perspective, Karee has had diminishing lung function over the last X years (3 years? 7?) and thanks to their excellent and skilled intervention, she now has two, beautiful, healthy, fully functioning lungs again.  I gotta think that her body deserves some type of adjustment period to work out the kinks, and not be thrown all kinds of meds that will fight symptoms and not causes that aren't even yet fully understood!

So, when Karee told our dear E.N.T. friend that she wouldn't take them for at least 6 months, he went on a bit of a tirade, and said that he wouldn't treat her any more, that if she wouldn't follow his treatment regimen, he wouldn't remain legally and medically responsible for her.  He went on to say a bunch of "if this" and "if that"s, and "if this then there's a 14% chance of C_______"... 

Well, we're kind of glad to see the back side of this particular doc, who had done nothing to increase our appreciation for all things allopathic.  We will be scheduling a follow up appointment with our pulmonologist (who we really do like) as well as an appointment with a new, improved (hopefully) E.N.T. very soon as well. 

Karee is still taking steroids from the procedure last week, to keep her trachea and lungs 'calm' and under control.  Ironically, they are making Karee anything but 'calm'- she's sleeping 3-4 hours a night, and walks around feeling like she's on a nasty caffeine buzz.

Sigh.  Summer is upon us, though the kids still have a few days of school left, and we're hoping to get to unwind some - we do NOT want a summer of doctors and hospitals!

All for now.  Happy June everyone!

Steve (and Karee)

That's that.

Well hello again.

We're home safe and sound, going over medication instructions and warming up some soup for Karee's pretty-gosh-darned-sore-throat.

The procedure went really quite well - the doctors went in there and did their thing successfully, and it seemed almost anti-climactic! Some of our medical friends have been saying that "you don't want to be an interesting patient" and while I think Karee used to be an interesting patient, she's becoming less interesting now, and we're totally fine with it!

The ENT showed me pictures that showed before and after and it was pretty darned stunning.  Before showed goopy, lumpy tissue that was difficult to identify, and the after showed a lovely long, open trachea.  No complications, nuthin'! We'll check in with him in 7-10 days and go from there.  He felt very good about the procedure.

The pulmonologist did the bronchoscopy as before- there was some additional scar tissue to be removed, and he rinsed out the lung again, took some biopsies, but didn't think anything looked out of the ordinary.  Perhaps surprisingly, it was the airway to the right lung that looked more inflamed than the left, while it was the left one that was completely covered by scar tissue a month ago.  Somehow the leading edge of the scar tissue remained more active, while the scar tissue that had been there longer was a bit more passive?  So yes, he removed some tissue from the right airway and it's clean now, but the pictures show much of the tissue to be rather inflamed, or in his words, "angry".  Looking at the pictures, 'angry' feels about right!

Karee was in very good spirits all morning - lots of our usual banter and silliness.  That started to wane when the procedure was put off (the previous operation in the O.R. was running long) and she was finally wheeled into the O.R. an hour and fifteen minutes late.  I didn't get to see her until 5:45 or so - she had woken up pretty drowsy still and feeling nauseous so they gave her some nausea medicine and that knocked her out for a good hour plus.

At this point she's up and about moving slowly and gingerly, but she's home!

Thanks to everyone for constant support and good wishes, those near and far.  Special thanks to my 'visitors' and hand-holders today - Dick Evans, Kristi Sandusky, and Jerry "Poppy" Justice!  Good conversations all around!

Peace - I'm tired and will be going to bed shortly!

Steve

Ding Ding Ding! Round 2 (or 3, depending on how you're counting)!

Good morning all,

So Karee will be going in today to have her 'trachea shaved'.  Woohoo!  This is the proverbial 'other shoe' we've been waiting to drop.  It was scheduled just a week or so ago, and all thoughts in the past week have led up to, but not very far beyond, this point.

To recap, after opening up her collapsed lung by removing gobs of scar tissue from the entrance to the lung's left main airway, the big plumbing that remained was to take care of the serious narrowing at the top of the trachea/sub-glottal region. Today the E.N.T. surgeon will go in and cut and suck away the scar tissue and dab it with some mighty powerful medicine to hopefully keep it healthy.  A friend of ours who is also an E.N.T. (hi Tyler! and thanks for sharing your expertise!) told us that this magic medicine is what makes this procedure so safe and so successful.  "Mitomycin c" is a chemo-therapy agent apparently, and has been very helpful in the recovery process.  I don't even understand it so much, but he made it seem like a big deal, so I'll jump on that bandwagon. Yay mitomycin c!

So after they do that bit of crucial plumbing, Karee's pulmonologist will take over and go back down into her lungs to check to see how the original surgery is healing.  In our follow up meeting to the original surgeries with the pulmonologist a few weeks ago, he said he might remove some more scar tissue if the situation demands it, but he also might just take a look-see and get out. 

Karee's procedure is at 11:30.  We have to show up at 9:30 and I'm sure she'll get to enjoy being picked and prodded for a while before we settle down and sit in pre-op for a good long while.  I will be passing at least some of the time during the procedure at a new favorite restaurant directly across the road from Swedish (the hospital) with one of our very good friends Kristi.  The plan is that Karee will come home tonight, and then first thing in the morning I get to go to the airport to pick up my sister Beth who is coming for the weekend to hang out with Ella and take care of Karee while I head off to the Suzuki conference in Minneapolis for the weekend.  Just a run of the mill weekend around here, ya know?

I don't expect I'll be updating the blog until we get home, so look for a recap of the days' excitement 6:00 or 7:00pm?

Thanks for all your good wishes!  While we're a little nervous about the procedure (this tissue they're removing is uncomfortably close to my singer wife's vocal cords after all) we're in the hands of the best of the best, and this really should be the beginning of the end.  Hopefully an end to chronic coughing and wheezy breath, and the dawn of a new day!

All for now,

Steve

Woohoo! Another procedure!

Hello everyone, time for an update!

We found out yesterday that Karee will go in for another procedure next Thursday, May 24.  During this procedure, the E.N.T. will shave away the scar tissue from her trachea that was creating the stenosis/narrowing.  Also on the docket will be a check in with her lungs, to see how it's healing from the original bronchoscope.  The pulmonologist says he may do some more scar tissue removal down there, it depends on what he sees.

We're mostly hopeful at this juncture, although the E.N.T. seems to be pretty heavy handed in the medication department, telling Karee she'd be on steroids for months and months, and a proton pump inhibitor likely forever.  (His diagnosis was that she has 'silent reflux', reflux of the esophogus.)  This bit of the diagnosis was very upsetting.  Karee is having to rework her ideas about western medicine throughout this process, and until now she's received such a high level of respect and caring from her doctors, that this particular doctor came off looking not so good.  We've had conversations with other medical folks in the know who disagree considerably with the length of prescriptions involved, so the final chapter there has not been written.

As always, thanks so much for everyone's continued concern and support for Karee and all of us as we work through this, ahem, 'excitement'.  May is usually pretty crazy, but this May has been way over the top!

Thanks again,

Steve (and Karee and Miles and Ella)

An update from Karee

Hi there,
I thought I would send out an update on what is going on with me...right now, I'm just in recovery mode.  I'm not doing much of anything and it feels a little weird!

My energy is pretty lackluster, but I am managing to get out and go for a short walk.  After that I need a nap!  Two procedures requiring anesthesia make bouncing back a little rough.  I'm coughing like nobody's business and it has begun to take a toll on my voice...I'm pretty hoarse today, but it's important for this stuff to move out of my lungs!

I have an appt with the pulmonologist on Monday afternoon and an appt with a neurolaryngologist on Wednesday afternoon.  No idea what will happen at either of these appts!

Alyson, if you could plan on teaching Thursday and Jilly, if you could plan on teaching Saturday, that would be great.  I'm not sure that it's time to get back just yet.  Hope that works out still...

Your continued healing thoughts and prayers are still requested and appreciated.  Thank you all so much for helping us out!

xoxo,
Karee