A More Interesting Life Than I Would Have Preferred

"All we have to decide is what to do with the time that is given us." - Gandalf

My current daily routine:

It's 4 am and I am descended upon by a horde of young women in nursing uniforms. They jar me from my sleep without warning and demand that I answer shockingly personal questions about my bathroom habits. Having received answers to their questions, they seize upon my body with sharp needles, siphoning off my blood and injecting me with some kind of marinade. Then they demand I sit up in a chair whereupon they shove a big gulp sized glass full of pills in front of me and demand that I swallow them. (One of the pills is the nefarious "potassium" pill. It is made with microscopic tongue grippers to render it completely unswallowable. It is the bane of the pill swallowing community.)

I am allowed one communion cup of water to accomplish this task

These women are, as weird as it may seem, the pointy end of the spear in driving back the forces of darkness. I'm not kidding.

I wrote the comments above as a patient in intensive care.  It was a Facebook post so that my friends, who were worrying about me at the time, could have an update on my condition.  I have lived a far more interesting life than I would have preferred, and what follows isn't even the half of it.  But it is true in all of its particulars and makes for a good tale.

I was born with an absurd aortic deformity that, though usually discovered during childhood, was never discovered in me until I was in my 20's. On Christmas Eve that year a cardiologist walked into the examining room and told me that without open heart surgery my life expectancy was only 8-10 more years. About 2 weeks later I went into surgery while my wife and our 6-week old baby waited for me to come back.  

As it happens, thoracic surgery is really - really - painful and when they chop out one of your ribs and spread the rest of them apart it is uniquely unpleasant once the anesthesia wears off.  I have a tendency to awaken quickly from anesthesia and actually have a memory of being moved from the operating table onto a rolling bed to take me to intensive care.

Fast-forward 30 years.

Having had an MRI for a pinched nerve in my neck, my cardiologist was unexpectedly summoned and came into the room, clearly distressed, to tell me that my aortic defect had "recurred". The original "correction" had involved chopping out some of my aorta, no doubt using some sort of meat cleaver, and replacing it with an artificial graft by attaching the two resulting ends of my aorta to the opposite ends of the graft.  Some time after my original surgery, the medical world discovered that you had to remove a larger chunk of the aorta than they realized at the time of my surgery.  Without that larger removal, in 10% of the cases the defect reemerged and I was one of the lucky 10%.  Peachy.

The problem for me was that you really only get one relatively "easy" go at the surgery I originally had. Once you've had that surgery, scar tissue usually forms that involves your spine (your aorta is on the back side of your heart) and attempts at a second surgery have shown an alarming complication of paraplegia.

At this point I found myself reading medical research papers trying to figure out my options.  My cardiologist assured me that there was no one in the Pacific Northwest who could touch my case.  So I began googling and reading papers from surgeons at Mayo, Cleveland Clinic, Boston, etc.  It was pretty clear that the only option I had was to undergo a surgery in which they put my body into hypothermia to reduce the chance of paraplegia and to keep my brain cooler, while they stopped my heart and tried to redo the original surgery.

I don't mind telling you this seemed like an unhappy prospect.   But it was about at this time that I ran across a team at UT Southwestern medical school.  They had experienced some success with placing stents in aortas, which is a dicey undertaking, since if you tear open the aorta while placing the stent it is a life-threatening emergency.  But this team had invented a means for measuring the elasticity of your aorta, and were theoretically able to place stents in mature adults with a diminished risk of aortic dissection (i.e. killing the patient).  Well, having a stent seemed more attractive than hypothermic surgery with those attendant risks, so we signed on with the team in Texas and they proceeded to study me for 6-9 months.  Eventually they said they thought they could place a stent to correct my annoyingly persistent defect. (I have other annoyingly persistent defects - you can ask my wife and children.  But they have more to do with my personality and just don't make for stories that are all that interesting to tell.)

Weirdly, they informed me that they would do the stent at Children's Hospital.  It turned out that there was an FDA program being run in that hospital involving the use of cloth-covered stents to patch over torn aortas.  By doing my stent at Children's, if they did actually tear open my aorta they would be able to try to save me using a cloth-covered stent without having to seek permission from some dullard of a government health care bureaucrat.  (In my imagination, I could see myself bleeding out on the table while someone was trying to get the health-bureaucracy equivalent of an IRS agent on the line:  "Press 1 if you need authorization to save your patient's life." Oh brother.)  So yes, Children's Hospital was a good choice.

Thus early one morning I checked into Children's.  It was a bit awkward really because all of the nurses were used to dealing with little children and they really wanted nothing to do with a hairy-legged grown-up man.  And who can blame them? Had they known me better they would probably have even been more averse. Inevitably, though, some unfortunate male nurse drew the short straw and he was assigned to me for the day.  

Before they took me into surgery, I had a moment to say goodbye to my wife.  My own recommendation is that you should avoid, whenever possible, the kinds of circumstances where these sorts of goodbyes are necessary. This was the second of 3 times my ridiculous aorta has forced us into such a conversation.  The upside, however, is that you have your nose thoroughly rubbed in the knowledge of what and who you truly love.  It has always seemed to me, though, that there must be an easier way to come by that understanding.  I have started to wonder whether God sees me as such an inveterate hard-head that he has to go to these drastic lengths to make me appreciate all that I have been given.  No one on this planet has a better wife than mine and I have learned through extraordinary hardship that wives are gifted with a magical power to heal their husbands. And that power seems to be proportional to the extent to which they are loved by their husbands. But that is a post for another day.

Off to surgery I went and, 6+ hours later (I am told), out I came with a successfully placed stent. It was, by all accounts, a victory for science. Teachers from the medical school came to watch the procedure and my case was written up in the literature for all the big brained medical researchers to read I suppose. I was happy to be of service to the accumulating knowledge of medicine.  Although, if you don't mind my saying so, there are much more congenial ways of becoming a celebrity than by having an exotic medical condition. If you simply must be a celebrity of some kind, I strongly recommend you consider Instagram or YouTube.  As a medical celebrity, all the doctors are fond of you and all that, but that is poor compensation for the risks you have to run. Instagram "influencers" have it much much better.

Fast-forward three years.

I'm wandering into the bathroom in the early morning hours - still dark.  I cough. I experience an odd sensation, like my esophagus is full of liquid but not like phlegm.  I turn on the light.  My hand is covered in bright red blood.

Here's what happened: 3 years after the stent was placed in my aorta, it had migrated unawares through the wall of my aorta and punctured my lung. That morning, blood was flowing from my aorta into my lung along the stent which was bridging between the two locations.  I didn't know what was happening as I stood there looking at the blood on my hand.  A little while later, the emergency room doctor didn't really understand entirely what was happening either when, ashen faced, he told me I only had a few moments to live.  What a job that must have been, when you think about it. Who wants to tell someone they're dying? But by doing so he was really doing me a kindness.

One of the life lessons I've learned through this is that refraining from saying hard things can be one of the unkindest acts of all.  This is an aspect of kindness that is almost universally ignored in our current cultural moment. But I digress.

The hospital summoned a Care Flite ambulance to take me to UT Southwestern. There was some concern that I wouldn't survive the trip and, yet again, I said goodbye to my wife and children - just in case.  It was all kind of surreal because I felt no pain and, in fact, I didn't feel particularly unwell. Arriving at the UT Southwestern heart hospital was like something out of the movies.  6-8 people met me on the sidewalk outside and before I was even on the elevator to intensive care I had tubes in my jugular and an artery, and a second IV in my arm. After taking lots of pictures of my unraveling vascular system, happily, one of the best heart surgeons in the world took on my case and came to see us in intensive care. He informed us that I would have to have emergency surgery, but after looking at my pictures, he felt like the surgical team would need a full night's rest to tackle the job.  He believed I would survive the night and that it would be better for everyone if the surgery was performed when the team was fully rested. It turns out they don't remove stents bridging between an aorta and a lung every day.  The surgery would involve a 20 hour procedure.

To do this without paralyzing me, I was now facing the hypothermic surgery I had read about a few years before and been trying to avoid.  But into surgery I went in the wee hours next day.  

(You may have gathered that I did survive the night though it was a sleepless one. My wife and I talked through the night.)

I am told that the next day in surgery they cooled me down, literally put my head into an ice bucket, completely drained my body of blood and stopped my heart. Once they got me to this point, they apparently had 30 minutes to fix my aorta before my brain started to die. They did it in 23 minutes. Started my heart. Found some leaks. Stopped my heart. Made some repairs and restarted me again at 27 minutes.

Now before all that folderol they had come into intensive care and had me sign the permission forms. And as part of that, they started listing off all of the bad potential outcomes and their respective probabilities so that my consent would be "informed".  Now, thankfully at that time, my wife didn't really understand the idea of cumulative probability (I explained it to her later when I survived the surgery unscathed more or less).  But I was quickly adding up the numbers as they were talking and it seemed like I had about a 30% probability of something bad happening - something which would alter me in some way. There was a no-kidding improvisational aspect to the surgery too - so that was an unfortunate wildcard in the mix.

Since you're reading this you've probably figured out that I survived the surgery and without ending up all that much more annoying than I was when I first went in.  It was a pretty awful recovery and really longer than 6 months before I started feeling like myself again.  And there were some psychological hurdles to get over, like coming to grips with having actually survived, and then believing that I might actually have a future. Re-engaging with that belief can be a challenge on the heels of what I had been through in the preceding days and weeks. That part was kind of a surprise.

Anyway, all of that long story is mostly just a build-up to a funny little vignette I want to finally tell. One of the abiding lessons from my very first open heart surgery was the surprising fact that the patient gets very little rest in a hospital. Maybe this is unique to my own experience or unique to the absurdity of my own affliction. I don't know. But I was struck by how tired the hospital made me and the general lack of sleep that I got.

The most recent surgery with all of the emergency drama served to reconfirm my impression that hospitals are lousy places to get any rest.  That seems to be especially true in intensive care, where they are obliged in some strange way to amp up the activity in the middle of the night. (Are they under the impression that the patients would like to amp up their activity too? If so, I can authoritatively say their impression is woefully mistaken.)

Two or three days into the haze of my post-surgical stay in intensive care, a nurse woke me up at 2 in the morning and told me that I needed to get out of bed and weigh.  "I beg your pardon", I said as I tried to get the cobwebs out of my head.  "It sounded like you said I have to get up and weigh."  "Yes", she said with an endearing though annoying cheerfulness given the hour.  "We need to check your weight," she declared.

On the one hand, I felt like her request was laughably absurd.  I was connected at that time to perhaps 10 machines. It required a cast of thousands to navigate me around if I was ever out of the bed, not unlike the mob of people who hold onto the ropes of a floating Macy's Thanksgiving day parade balloon.  But on the other hand, I kind of wanted to weigh.  At that point in time, I had been nearly a week without any solid food to eat.  Weight control had always been something I have had to be intentional about in my life, and I had this wild thought there in the middle of the night, after a week of not eating, "I might be down a very respectable number of pounds." (I may have recently been on the verge of dying but one has to have one's priorities after all.)

So the nursing crew came in and hoisted me up out of the bed. They had an ingenious scale for people in my condition - it had handle bars! So despite the pain and discomfort and largely motivated by the desire to flatter myself, I heaved myself up, with the aid of a goodly portion of the hospital staff, and stepped onto the scales with a delightful anticipation of what was almost certain to be hard evidence of my newfound svelte condition.

But reality never measures up to fantasy, alas, and what I found was that, far from losing weight, I had somehow managed to gain 40 pounds!  The mind reels. I thought, "This can't be right!".  I didn't feel like I was out of my head, but how was it possible that someone who hadn't eaten for a week had actually gained 40 pounds? A person couldn't even gain 40 pounds over Christmas, not even if they hoarded all the desserts for themselves!  The whole thing was outrageous.

Well, as with everything else about those days, there was a medical explanation. It happens that, when they drain all the blood from your body and put you into some sort of suspended animation, ideally the time comes to re-animate you and they need to get your blood pressure up in a hurry. They do that, so I'm told, by loading up your body with fluids.  Happily I had not at that point been in front of a mirror myself, because something no one had bothered to tell me was that since returning from surgery, I had developed an alarming resemblance to Jabba the Hutt.

At this point, the nurses began injecting my IV with lasix, and I thus began a 3 day odyssey of expelling fluids.  I went to the bathroom so frequently during those three days that it began to seem like some strange new form of aerobic exercise. Only three days later I got back on the scales and found that I weighed 10 pounds less than the day I had entered the hospital – I had lost 50 pounds!

During my 3 day extreme weight loss plan, I was forbidden almost all liquids. That is what lay behind my peevish comment in the Facebook post at the top regarding only being allowed a communion cup of water to eat what seemed like an entire pharmacy of pills.

I started this tale with an old Facebook post and I'll end it with another one from a few days later.  I alluded to this a bit in some earlier remarks about my wife.  I wrote it the day I got out of the hospital:

Comforted back to life. That's what has happened to me. At every step along the way, my wife has planted herself beside me - soothing me, reassuring me, kissing me, caring for me...comforting me.
And often while I'm out of my head on drugs. Catastrophic health issues are a challenge on any basis, but they are insidious in the way they encourage you to despair. My wife is having none of it. She has lifted my spirits more times than I can count and has, using her vast reservoirs of faith, calmly and determinedly reassured me until I have had time for the pain to subside and to come to my senses.
It would be impossible to overstate how central she has been to my recovery. She has loved me in the hard places. I adore her.

Love big while you can.

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