Rejection is a heartless bitch

My breathing has gotten worse over the last 2 months.  I had a bronchoscopy when my numbers first dropped (everything looked great!) and tons of tests done.  Nothing seemed out of the ordinary.  But my numbers kept dropping.  On Friday I was told that I'm in rejection.  And not the kind easily fixed...

Chronic rejection is defined as two drops in your FEV1 by a total of 20%.  I've lost about 23% of my lung function.  I get short of breath and obviously I ain't running no mo'.  BUT I can still walk like crazy, get on the elliptical, function pretty well, and break a sweat.  I'm FAR from my PH days.  But it is a little stressful to feel like the PH is starting again.  Okay, a little stressful is an understatement.  It's downright scary.

All of my anti-rejection meds have been increased.  Oh yay.  So now we have to watch my liver and kidneys very closely.  And I have to go back to my super-duper cautious mode.  Not that I haven't been super cautious, but I really need to be careful again.

My doc is kind of surprised since I've been doing so well and haven't had any issues (infections, sickness, etc).  This normally affects people around the 3 year point.  But we all know that nothing about me is normal.  There could be a lot of reasons why this is happening.  It's most likely NOT from anything I've eaten (blue cheese) or alcohol.  I asked.  Repeatedly.  And then I asked again.  They kind of laughed at me and said it wasn't anything like that.  That would have caused other problems.

You know that joint pain I've been having?  Well, it could be autoimmune.  I have numbers that could indicate Lupus.  I see my rheumatologist next Wednesday and I'll see what he thinks (remember, I'm dealing with a Navy doc for this and UCSD for everything else).  But the inflammation could be triggering an immune response that is affecting my lungs.  Or not.  Since I'm on every medication to reduce my immune system so I don't have these problems.  But I still have pain.  And it's worse since they increased my meds, so that's weird.

A barium x-ray that I had this morning shows that I have mild reflux.  It's VERY common post-tx.  And it's a definite cause of rejection.  It's the way the meds affect our motility and the fact that we can't feel anything in our esophagus.  We can microaspirate into our lungs and that can cause problems.  I've been on omeprazole but that doesn't always fix the problem and could actually mask some other indicators of reflux (bile... yum!).  The reflux could be causing inflammation that triggers my immune system and attacks my lungs.  Or not.

Or it could just be my shitty luck.  Which we all know I seem to have a lot of.  I don't care that I ended that sentence with a preposition.

So I've started on an antibiotic that is almost a miracle drug.  Azithromycin.  Or maybe not so much.  I've been on it a month now and my numbers keep dropping.  But it has been shown to help both motility (the reflux) and the rejection.  So I'll keep on keeping on with that.  Hoping my numbers stabilize!  I have some sort of icky response to all -mycins.  This is no exception.  Yay.

The other thing I'm starting is photopheresis.  It's kind of like dialysis for your cells.  And it's supposed to be fairly effective at treating rejection.  Not many centers around the country even do it, so I'm super lucky.  It's a serious time commitment.  Twice a week for three weeks and then every other week until.... well... who knows.  At least a year.  One guy has been doing it for 17 years.  But he's alive!  They can reduce the treatments to every few weeks and then every few months depending on how you respond (if you respond).

So here's how it works.  I get an IV (they also use tunneled ports like my old central IV but I am SOOOOOOO happy I will probably not get one of those!!  I hope my veins hold up).  They draw out about a unit of blood over several (2-4) hours and separate the white blood cells.  My blood is then returned to my body and the white cells get treated with a medication and UV light that activates the med.  It basically tells my cells not to reproduce and die off.  So they return those cells to my body and those cells go tell all of their other little cell friends to get with the damn program and stop reproducing cuz they're killing me.  And supposedly they stop attacking my lungs.  And my immune system attacks the returned cells and leaves my lungs alone also.

What's cool about it is that is doesn't affect my immune system like medications do.  And there really are no side effects.  So here's hoping!  What's also cool is that I have to wear Blu-blockers like from the 80s (wraparound sunglasses) and I have to be very, very afraid of the sun for 48 hrs post treatment.  Awesome!  Hey, small price to pay to stay alive.

Some people have great success with both the reflux treatment and the photopheresis.  Numbers have come back up by an average of 25% if the reflux is my problem.  I'm waiting to hear back from my doc when he sees the results from today.  So I'm trying to stay positive about all of this.  But I'm pretty fucking pissed, sad, defeated, and tired.  I wonder sometimes why I flight so hard to stay alive so that I can continue to think about dying.  It's really a conundrum.

But after a few days of reflection and just being pissed off, I'm in a better place.  Sort of.  I'm hopeful this is my hurdle.  I'll get over this, get some lung function back and continue to ride off into the sunset of life.  Or it could get worse and kill me.  We shall see....

I'm grateful Tricare approved the treatment (it's not cheap and not approved by the FDA for rejection).  I start next Monday.  I'm really hopeful I'll see some sort of leveling off/ small improvement over the next few months.

So that's what's new with me.  I'm busy eating a shit sandwich :-)  I told Holly I don't understand why I can't have a unicorn glitter fart sandwich with a side of Lucky Charms.  Shit sandwiches suck.

I'll keep you posted as the fun continues!