Biopsy Results! And a full Wedding Weekend!

I'm moving a bit gingerly today, in part due to a full weekend of brunches, lunches and fun wedding times.  The wedding was beautiful - great weather, lots of great family and friends to celebrate with, and a memorable service and reception.  Maggie and Pete were happy throughout.  I was honored to have been in the party, to stand at my sister's side as she made her pledge in front of god and everyone. There are some great photos floating around on Facebook, thanks in large part to my cousin Andy Zimney - great photos Zim!

The other news of the weekend, the biopsy results!  Turns out my creatinine was high because of an 'acute cellular rejection' with some small incident of IgA nephropathy.  Of the various types of rejection, acute cellular is the least dangerous so far as I understand it.  It is also much more hopeful than a chronic failure which would be untreatable.  The nephropathy is likely a slow burn type of issue that may or may not be an issue.  It is not terribly well understood largely because it isn't often an issue.  A cellular rejection tends to slowly raise the creatinine levels as the surrounding tissues attack the transplanted kidney.  As is standard, I got a three day dose of steroids to reduce my immune system and give the transplant a chance to cozy back into my belly without being harassed by my t-cells and what not.  The steroids are not without their side-effects which added to the general excitement of the weekend.  Synthetic prednisone mimics a bodies stress response, which is what we all experience when we are under stress.  The feeling of being on a relatively high dose of prednisone is similar to being totally revved up, where it doesn't take much to start a rambling conversation or to obsess over one thing or another.  Being somewhat prone to rambling conversations and obsessions already, the effects on me were both familiar and a bit tiring.  This is the other source of my ginger movement today.

After bopping around all weekend with visits to the Abbott infusion center, dinners, the wedding and so on, this morning I've been slugging through a fog, where my body feels a bit disconnected from my brain - my self somewhere in limbo between them.  It's a bit tricky to track my thoughts enough to put down something coherent.  There's a thickness behind my ears and eyes and my muscleys are all mooshy.  On days like this it is hard for me to determine cause and effect - to suss out how much of my body is reacting to the drugs or stressful weekend of just a night of bad sleep.  Consequently, being an introspective chap, I lay about searching out how I might respond to this situation - or more simply how I think of how I'm doing.  Am I tired?  Am I reacting to steroids?  Am I coming off an emotional week where I was fairly convinced I was about to re-enter the doldrums of dialysis and waiting?  All of the above?  Maybe this is never a simple question - 'how are you doing?' - and we are only able to fake through it when our circumstances are stable for long enough to present a convincing story.

It is now Wednesday - I gave the thing a few day's space to see if anything cleared, and it has somewhat.  I'm a few days away from the steroid run and my body has somewhat settled out.  I've had a follow-up blood draw yesterday which held the creatinine low enough to keep everyone happy.  Coming off of this will take a few weeks; I remember the feeling of just starting to relax after having the second transplant (the first going so quickly), how it took months before I started to feel like a regular person in the ways it seems to count.  Normal walks through the grocery store and not anticipating taking my morning or evening drugs.  Ellie and I have a few more days at MITY before drawing another great session to a close.

Sorry this took so damn long to post - and thanks for reading!  

Biopsy!

C and I showed up at Abbott at 10:45 and I was admitted to unit 44 - a daytime unit used for overflow and short inpatient procedures.  My blood pressure was a bit high, even after I doubled my metoprolol for good measure.  So after they got an IV in and checked and rechecked BP, we got bumped in the radiology line and didn't have the procedure until 2:30 (it was scheduled for 11:30).  

C and I passed the time with conversation, some reading and a nap.  At this point I was undressed and in my hospital 'gown.'  90% of my stay was lying in a bed - doing nothing, needing to do nothing, and feeling fine.  But just wearing the clothes of the sick and lying in a bed that automatically adjusted to my movements and hearing the soft voices from the hallway was a lot to handle.  I think what got to me was the atmosphere, what the place felt like.  My caregivers were attentive and well-intentioned, but in their absence a person is almost oppressively IN a HOSPITAL without any recourse to leave.  It is this state of suspension, removed from the movement of the world, from the weather, from the normal passage of time that wore me down yesterday, along with my anticipation first of the procedure and then of the results.  The biopsy trip reminded me of what had been so inexplicably hard that first time through ten years ago.  

My Doc put the kibosh on pictures, which is too bad because as C told it, there were some neat images from the procedure.  The biopsy was an 'ultrasound guided biopsy,' which meant that a radiologist (or assistant of some kind) held the ultrasound while my Nephrologist poked in the needle.  The ultrasound is a standard thing - the same used in all ultrasounds and seen in movies - where there's the handheld bit and the grayish projection on the computer screen along with the goop that conducts the ultra sounds.  The needle used in biopsies is a real doozy.  It has a cylindrical handle with a big button on the top and a needle end about eight inches long, about the diameter of a metal coat hanger.  While it is pretty menacing, it doesn't necessarily feel like much as they numb the hell out of the belly area where they go in.

Because the transplanted kidney is in the front of me, located where you might rest your hand if you put it just inside of your pants.  The biopsy, consequently, was about two inches below my belt line.  The helper person, a female John C Riley, located the spot with the ultrasound where my doc would go in and he numbed it up with some lidocaine, which is ironically the most painful part of the process.  A short pinch and he let it set for about 2 minutes.  He then inserted the mega needle saying 'pressure is normal, pain is not.'  I did feel a bit of pressure, but the insertion was remarkable smooth.  I could feel the needle catching my skin on the way out a bit, not to mention see C's face, but I was totally numbed up and could only feel the movement.  

I have to take a brief aside here to say that my first transplant biopsy, in the spring of 2002, was thoroughly awful experience.  I was biopsied by a resident who shook, sweated and needed to make a second excursion into the barely permeable expanse of my belly.  Each journey of the needle through the layers of my abdomen were jerky and hesitant; he struggled to get the needle through and kept telling me to relax.  I'm not sure what kind of patient I was at the time, but I am grateful beyond words for the professionalism and sure hand of my current doctor.  The procedure, from cleaning to band-aid, took about five minutes.  Easy peasy.  

We now wait for the result.  It could go a few directions - everywhere from staring over to nothing changing at all.  I continue to attempt a balance regarding the impact and scope of this episode.  It brings up a lot for me and I'm working through that stuff, here mostly.  But I'm also well aware of how much worse everything could be.  My basement has some water in it after all this rain, but it's nothing compared to Duluth.  

Thanks for reading!  

Numbers

So I got the numbers and as I had expected they were about the same - 2.2, so game on biopsy!  To be honest I'm kind of excited to be able to write and post photos of the biopsy stuff.  C will be around the the procedure and I'm hoping to get some fun pictures with my Kidney Doc.  Mad Doctor stuff.  It is a grab bag of emotions for me right now - not all bad but certainly some difficult feelings in the mix.

I got lunch with my mom on Thursday - I talked to my mom about Slavoj Zizek, the Slovenian philosopher.  He's kind of a side-show youtube sensation, famous for proclamations about what toilet design can tell you about a culture.  Well he has some slightly more serious talks on the true functions of organic fruit (to comfort the buyer) and one that struck me about how in a permissive society, as we live today, in a permissive society a person feels guilt for not actualizing all of their desires - for not being everything to everyone all the time.  Old fashion guilt, he says, came from our unspoken transgressive desires, which we had purged from us in psychotherapy, or expressed in art as Aristotle would have it.  We used to feel guilty for wanting things.  Now that we can want anything, we feel guilt when we do NOT want things!  And we suffer a crisis of impotence.  We cannot possibly enact all of our desires - physically or emotionally or pragmatically so we must not be enough.  Permissiveness does not make us happier we only feel guilty for different things.

I carried on for some time on my unsuspecting mother but there was a reason and I remembered it; when I enter a health crisis this guilt or inadequate feeling dissipates - as though it were never there.  I was waxing on about the abstract benefits of a health crisis.  And it's true - in a lot of ways kidney failure was one of the best thing that happened to me.  I have clear memories of the weeks after the hospital when the world was spread out before me, new and ready, everything but my next few days stripped away.  My life was the equivalent of a near death experience in a safe clinical environment every few weeks!  At least it was in 2002.  It never took long to lose perspective and get bogged down in the stupid shit of everyday life once again (namely my insecurities and my resistance thereof).

My first reaction to hearing the high creatinine level was a kind of calm focus.  What I had to do next was clearly laid out in front of me, prioritized and simple.  And I did not have control over the outcome, which meant I couldn't do anything wrong.  That was a welcome feeling after years of my future outweighing my present.  I never once wondered why it had happened, or why it had happened to me.  I was never angry about it.  The wounds feel quantified to me; they are mine and I know them.  I wouldn't trade them for anyone else's scars or naivete.

Yet I'd still rather not go through this - especially again; it is something that given the choice I'd rather not happen to me.  My curiosity and even tracking my experience here feels like a kind of masking, intellectualizing the hurt to damped it.  I mentioned to C that I hoped I could remain productive should I be laid up again - that in 2002 when I was going on dialysis I moped about, played Civilization III and ate impressive sums of chocolate chips.  I didn't even read much.  I was attending to myself at the time but that too was a loss I did not understand, even though I felt it.  It is a challenge to plot a course among the centers of my emotional well-being.  The lessons of clarity of purpose (not dying) remain elusive to me.  Joy and suffering create meaning and it seems like it might be my turn for some of the latter.  But really, given the choice; no thanks you know?

Thanks for reading!  

What Support Is

More than any other post I've written I thought and stressed about that last one.  I asked C if I was over-sharing (a few times), and she suggested that I might relax about the whole blog thing and to not over-share worrying about it.  That people would be supportive and would be interested in knowing and so on and of course she was right.

In the twelve years or so 'AK' (after kidney? I'm experimenting) I've been overwhelmingly supported in lovely, pragmatic, real and non-pitying ways.  I remember thinking that the initial attention and support (both welcome and uncomfortable) would wane just in time for me to lose direction or fall apart entirely.  Not the case.  I suffered my quarter life crisis like everyone else and adjusted to the new post-undergrad world in quiet, nondescript ways.  Without fail folks have been available to me in just the way I would have wanted and have tried to be available myself.  I did not become 'that guy who had the kidney transplant' except to save distant acquaintances who lacked better conversation topics - and really, health is as good a conversation topic as any, if a little premature for people my age.

But to this day I struggle to talk about this or that issue being hard or troubling.  It has been tricky to self-advocate when my emotional well-being is at stake.  On matters of health I have been a vociferous advocate for myself; I ask questions, make suggestions and have filed complaints.  I consider myself a great patient, I try to have a sense of humor, to be light hearted, to be empathetic to my caregivers - but I am not shy about pointing out when something is wrong.  But so long as everything is going 'right,' I struggle to bring myself to talk about how uncomfortable or painful a procedure was, or how lonely it can be in a hospital.  In fact part of what made me feel like a great patient was that I did not talk about (I have to force myself to not use 'complain') how I have struggled.

Good nurses ask me how I'm doing - they know how I'm doing, they are just giving me an opportunity to share it - and I say I'm doing fine with a smile.  And they smile.  And for a bit there it is fine, just two folks bumping into each other, saying hello.  There is so much reenforcement for putting on a brave face, I was commended over and over for handing everything so well.  Largely I think I did handle it well.  And I believe my positive attitude helped me through the tough spots.  The tough spots I remember are a limited bunch amid a wide range of clinic visits, procedures, and major life adjustments.  I feel like I've navigated this experience well.  Yet the flotsam remains, and no one is a rock.  Or an island or whatever.  Porcupine.  So given this history of supportive friends and family and a good attitude welcomed by my caregivers, why have been I so reluctant to delve into the story in more than cursory ways?

Geez that's a big question.  Maybe it's time for a little tangent.  I mentioned the numbers game yesterday - that the thing to do now was wait for lab results and take it from there.  I had a dream this morning that I got a call from someone named Kevin at the clinic who told me, with evident relief, that my numbers were down to 1.95 and asked jokingly what I was doing with those numbers.  You silly man! What are you doing with your numbers!  Goodbye Kevins!  Then I was in the basement of my childhood home with life-sized pictures of underwear models from department store ads ....

No, I can't do this topic justice.  Not yet at least.  If six fig newtons can't get me there nothing can.  Too many gender rules, too much family history - it would take more therapy than I can afford right now.  Perhaps its enough to say that accepting support is what I am working on right now, and it is no small task - even in relation to the thing I am receiving support for.  I have survived this ordeal so far, and with some grace.  It is complicated and difficult to be vulnerable.  Publishing that last post, and now this one, brings me closer to the heart of this experience as much or more so than waiting for lab numbers.  Which by the way remain forthcoming.  I guess I'm saying that for me the lab numbers are secondary to my sharing the story.  The numbers will be what they will be and my next few weeks or months will play out accordingly - there is little I can do to affect that.  My struggle is to remain small and vulnerable in the face of this.  Like the last fig newton.

Thanks for reading!  

Once upon a time ...

For most of the last year I have anticipated sitting down to develop my experiences abroad into something deeper and touching more upon, with the benefit of hindsight, my emotional states at the time.  India in particular unsettled me deeply and I have struggled to find the language to express how it left me when I left it in the spring of 2010.  However, the direction of the next few threads will concern another facet of my life; one somewhat related to my Indian experience.  Almost twelve years ago, in August of 2001, I was diagnosed with kidney failure.  The first two years were a wild ride, comparable in a number of ways with my experience in India - it was a paradox of the intense and the ordinary, being hungry without being sated, and interminable in that instantaneous way - an off year of life.

Then from 2003 on my life returned to its normal trajectory - I started a career teaching, I lived in a few apartments before buying the duplex where I currently live, and as you all know I traveled enviably, extensively.  Thanks to the generosity of my uncle Bruce and many many others, my life was barely compromised by my chronic illness.  Like India, the period of my early twenties feels comfortably distant, dim on my horizon.  

Yet while I can choose to avoid the subcontinent in my future, my transplanted kidney function will most likely slow, and at some point it will need to be removed, setting in motion the same machinations that interrupted my senior year of college.  No one can say when that might happen - there are few people in my situation who might serve as guides, I am otherwise healthy - there was no known cause for my illness, and I am very young relative to most people with kidney failure.  I have labs done every few months to keep an eye on my blood levels.  With a few small adjustments, I have been on the same course for nine years.  Recently, however, my numbers have started to creep, and labs done last week indicate that there might be something wrong.  

There are so many aspects to these stories that I have not told - so many of my thoughts and feelings.  It is difficult to create a linear narrative.  This was my initial hope with this blog- to suss out the untold details and meta-narratives of my world travels; how the music I listened to in different countries remains locked there - lilacs, perfume or that smell in an old brick building - I turned on Beach House to sit down now and my mind keeps playing images from Morocco.  Morocco feels as distant to me as it must to you until this music starts and slam I am on a bus, climbing a hill, lonely and scared, clinging to the English speaking travelers I met.  

I had labs done today to double check the results from last week.  Leaving the clinic I called C and opened a bit in the car.  I flashed back to a number of episodes that continue to resonate in my memory - experiences impossible to relate.  Flashes of being in a dialysis center, of outpatient procedures, of doctors and nurses, 9/11, coffee shops - all neatly associated with this pervasive facet of myself that has been dormant.  I had not yet written about India because I knew it would be right there waiting for me.  I knew that time would not dim what I had experienced there.  Even so, I underestimated how close these 'kidney' experiences were to me.  

I have not talked about almost any of this publicly for reasons that are difficult to explain or understand myself.  I often think that I do not want to complain or sound whiny, but it also feels private to me, like a secret weapon almost.  Certainly some psycho-babble could explain a lot of this.  Even what I wrote so far has felt intimate.  

The labs look at a few indicators of kidney performance, most importantly creatinine.  Creatinine is exclusively cleared by the kidneys and thus is a useful indicator of kidney function, and it was my creatinine levels that have recently caused alarm and raised this blog post.  

A 'normal' creatinine is 1.0 - mine had floated around 1.5 - 1.7 for years.  When I returned from traveling, the number drifted up to around 1.9 - or roughly 50% of healthy kidney function.  In the last few weeks it spiked at 2.1 and then last week at 2.35.  That is a pretty high number, and the clinic responded by scheduling a biopsy for next Tuesday, pending similar labs drawn today.  

So that's where we sit today - wait for the numbers.  It's possible the numbers will adjust and we will be back to normal and wiping the sweat from our brows in relief.  Yet I must confess that this most recent health incident is weighing heavily on me.  The world shifts slightly on its axis with a potential adjustment like this on the horizon and I'm not terribly hopeful about it.  

This afternoon, however, it is summer.  Tony and I posted quite well in another Urban Assault, 5th overall this time.  C and I are planning on burgers, wine and backgammon tonight.  And I'm thinking about buying a new bike!  All very exciting things going on, and now time for an afternoon nap.  

Thanks for reading!