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Monthly Archives: April 2015

“You should be dead.”

I was finally awake and interacting with the world once more, after having my chest opened up, my heart and lungs detailed to clean out blood clots and repair cardiac birth defects, and then spending nearly two weeks unconscious while machines breathed for me.

As I slowly began my recovery, both mental and physical, I encountered many, many employees in the hospital who would greet me by name and tell me how glad they were to see me awake and moving around.

This was always followed by some variation of, “You should have died. We’re glad you didn’t!”

Even my surgeon told me he could hardly believe I lived.

(Not to put any pressure on me to get completely well again, or anything.)

I was extremely weak, and there was a lot of pain. And even though I had spent so much time unconscious, I was exhausted.

So the hospital staff began to torture me.

No, it wasn’t real torture; it just felt like it. I did breathing exercises to help my lungs recover. I was given special instructions on how to move and how to lift in such a manner as to protect my sternum while it healed. I learned how incredibly difficult it is to get out of bed without using one’s arms.

All I wanted to do was rest in bed and grimace; all the staff seemed to want me to do was sit in a chair, or walk around the care unit. Which I did, grudgingly and grimacingly. I wasn’t allowed to do the things I wanted; I didn’t want to do what I was allowed.

Even so, when I’d run into yet another nurse or orderly or x-ray technician who would smile, genuinely smile, when they saw that I was alive and kicking, it wasn’t difficult to smile back. While I still didn’t comprehend how dire my situation had been, I also was glad I was alive, pain and everything. I spoke so often to so many different caregivers during my recovery I became convinced that every employee at the hospital had taken care of me at some point.

I had a lot of thinking time. It was difficult for me to accept what had happened to me. While I could understand it, I just couldn’t wrap my head around the facts. To me, it seemed like I went to the hospital with a chest cold and woke up broken. The cognitive damage I was dealing with, combined with the memories of things that hadn’t happened, and the lack of memories of what did happen, made my experience feel like it had happened to someone else.

Except when I’d sneeze, or cough. That brought it all home when it felt like my chest was being torn in two.

A hematologist told me the clots had formed after the antibodies in my blood started attacking the walls of my blood vessels, roughening them and causing the blood to stick. What triggered this, however, is something we’ll probably never know.

He then told me I should have died (sigh) and that I had the worst case of blood clots he’d ever seen.

I told him I wasn’t sure if that should make me happy, or not.

My condition frustrated me. I expected to bounce back as quickly as I had from previous surgeries in my life, never mind how incongruent they were in comparison. My body was weak; more disturbingly, my mind was weak as well.

I tried to write with some paper and a pen one of my close friends brought me (among other things – between her and my roommate I was extremely well cared for on the civilian side of my hospital needs).

I managed to cover about a fourth of a page before my strength gave out. My disappointment escalated when I realized I couldn’t read back what I wrote.

Chickens wouldn’t be able to read what I had managed to scratch out. The only part I’ve ever been able to discern reads “Ha ha ha!”

The universe apparently laughed at my efforts.

Crafting a sentence was nearly beyond me as well. I confused words frequently. Homonyms were beyond me. Clarity was difficult to achieve. I started to believe that my writing career was at an end.

A small worry, however, compared to other matters I suffered through.

As humans, we’re constantly learning, gaining wisdom and insight where we can. For instance, while I was hospitalized, a quote from the show MASH came back to me time and time again: “No one ever died of embarrassment during a sponge bath.”

It feels like it though.

Slowly, my condition improved. I was a little stronger each day; I hurt a little less each day; I made a little more sense a little more each day. A month after my surgery, I was sent home with a cane to continue my recovery.

The cats were happy to see me.

Writing online updates for friends and family helped my mental recovery. Daily walks helped my physical recovery. But often it felt like I’d never be better again.

I spent my time reading, watching TV, and wondering how many gummy worms it would take to equal one serving of fruit. I wasn’t allowed to lift anything heavier than five pounds or a jug of milk. My jugs far outweighed both, as did practically everything else I encountered during the day.

The holidays came, feeling different than they had in the past. At Thanksgiving, I knew I had plenty for which to be thankful.

(Like my ability to not end a sentence with a preposition.)

Christmas was different, too. I felt more festive. I even put up a small artificial tree, with lights and ornaments, marking the first time in over a decade I hadn’t hung a drawing on the wall labelled “Tree”.

There were complications, of course. An e.coli infection at the end of my hospital stay had knocked back my progress. While I’d hoped to return to work at the beginning of the new year, in December it was discovered the wires holding my sternum together had pulled through the bone, leaving my chest in pieces that would require further surgery in January and delay my return to work.

I felt more medical anomaly than medical miracle.

The second surgery was smoother than the first, keeping me hospitalized for only five days. My sternum recovery time was reset to eight weeks again, but tempered by the joy I felt from having a solid rib cage once more.

Ribs aren’t meant to move independently any more than one should be able to see his heart throbbing underneath the skin where there should be breastbone instead.

This time, there were no chances taken. My sternum was reconstructed using heavy gauge wire and three titanium plates.

(I had secretly hoped for stainless steel plates so I could hang refrigerator magnets on my chest.)

Finally, I started back to my job at the beginning of March, five months after the adventure began.

(It seems my ability to write has returned, but as for quality … that’s really not for me to judge.)

An old friend mentioned online that he couldn’t imagine going through what I did.

I can easily imagine other people going through what I did because it wasn’t anything special, I told him. I dealt with it because I had to. That’s not bravery. That’s human spirit.

The heroes in my story are the surgeons and the doctors and the nurses and the respiratory therapists and the janitors and all the other healthcare workers involved in saving my life.

My roommate and my friends and my family and my coworkers and acquaintances and celebrities and everyone who gave me encouragement and kept me in their thoughts played big, heroic roles, too.

Heck, even my cats were more heroic than me, sticking right by me once I finally made it home with barely enough strength to shoo them to the side when they tried to sleep on my chest.

All I had to do was get better. And really, in comparison, I think I had the easy job.

Because I can’t imagine the helpless horror of watching any of my friends go through something similar. That takes a strength that I’m not sure I have.

Looking back, my recovery was slow and steady, with no real momentous breakthroughs.

Well, except for one …

When I was being discharged after the second surgery, the nurse bundled me into a wheelchair to take me to my ride home. The elevator was crowded with people. One family looked down at me, beaming smiles, and said just how happy I must be now that I was being discharged. Others nodded and murmured their agreement.

I looked back up at them all, and managed a tired, yet hopefully brave, smile.

“They’re sending me home to die,” I said.

The elevator fell instantly silent. The smiles froze on their faces as they tried to process and respond to what I had said.

I let the silence hang for a few uncomfortable seconds before I told them I was joking. Secretly, I was proud of myself for coming up with that joke on the spot.

It was that moment, right then, that I knew for sure.

I was going to be okay.

 

By Timothy H. Kepple

Life can be funny, with a strange sense of humor to boot, throwing events and situations at us just to see what sticks. The rate at which fortunes and follies change can make anyone’s head spin faster than a carnival side show exhibit.

A lot has happened in the past six months, and personally, I’m ready for a break from side-shows slinging life events.

(I say this as if I have any say in the matter.)

2014 was going well at the halfway mark. My long-suffering roommate and I moved into our own house in May; we adopted another cat in June; settling into a new position at work was going well for me; home improvements were being made – it was a happy time.

I had my yearly physical in September, and all was well. The pain in my left calf I felt a few days later was really the only sickness I’d had all year. When it went away after a week,  I simply chalked it up to muscle strain from work-related activity and life went on.

The new position at work was much busier and breakneck, but I did my best to adjust. I took a pillow to my office so I could take a nap under my desk during my lunch break. I was working hard, and I was exhausted by the middle of the day. The catnap helped.

As September was coming to an end, suddenly just walking a short distance took so much out of me I struggled to breathe. It hit me on a Friday evening. Increasingly, I was short of breath. Lying down left me feeling like I was suffocating, forcing air into my lungs by conscious effort of will.

By Monday morning, I did something I hadn’t done since being hired over a year ago: I called in sick to work.

I felt bad for doing so; I hated to miss a day of work and let down those counting on me.

When I didn’t feel better the next day, I called in sick one more time and headed off to the clinic to find out what was going on.

I explained my symptoms to the staff. To be honest, I felt silly even bothering them for what I assumed was the beginning of a case of bronchitis, or maybe walking pneumonia at the very worst. I expected a prescription for antibiotics and orders to sleep until I felt better.

So I was surprised by the grave looks and oxygen mask given to me. Bewildered, I answered their many questions as well as I could. Trouble breathing? Yes. Shortness of breath? Most of the time, yes. Chest pain? Mmm … four days ago when it started, but nothing since then. Any other pain? None. Headache? Nope. Fever?

That one they answered themselves. Apparently 104 degrees is worrisome. I knew I had some fever, but it was only then that I began to seriously think I had pneumonia. I was poked and prodded and wired and tested and fussed over. I was getting tired, but lying down still made it much more difficult to breathe.

I felt embarrassed for surely wasting their time. They must have been having a boring day, and now were jumping at the chance to run tests just to have something to do.

My second surprise came when the staff told me in their grave voices that they were having me transferred to the emergency room downtown via ambulance. I was sternly rebuked when I said I’d drive myself.

I was greatly disappointed when the ambulance didn’t even use its siren.

I was wheeled into the ER and parallel parked along a wall, hugging an oxygen cylinder. My memories tend to run together after that, as test after test was thrown at me in hopes that a diagnosis would stick.

I have memories of getting ultrasound scans on my body, and joking about handsome firemen in compromising situations with the woman doing the scans. Vague glimpses of trying to make a friend borrow my car. Discussions with a doctor about things I can’t quite remember, but which involved having my heart and lungs removed and replaced with mechanical devices. Selling strawberry banana sherbet that pumped from a pipe coming out of my stomach. Waking up in a recovery room in a local hotel that was making money by hosting surgeries in the off season.

Time passed slowly. I was taken in for multiple surgeries. During one surgery, I some how managed to wander off into the hospital, where I found a room to rest in for a few days before the surgeon’s assistants finally tracked me down and took me back.

I was cared for in a number of different facilities, all of which had wildly different decor and a television hung on the wall in the same spot, playing the same show, over and over.

So much time passed it was hard to keep track. I was awake during the day and sometimes at night. Winter came; and I was always cold. I could see workers outside plowing and removing snow. The TV added a new show to its endless rotation, a Christmas special of some sort. At least now I had a vague idea of what month it must be. I was visited by friends and family.

I was helpless as things happened around me and to me and there was very little I could do to be an active part of the world. I spent my time laying down in my hospital bed, unable to get up. I witnessed terrible things happening around me, shady staff making drug deals and holding dance parties after pushing patients to the side, knowing I was helpless to do anything to stop them. I simmered in my anger.

Through an unlikely course of events that wasn’t even my fault, I managed to get myself and my roommate fired from our jobs, after which I burnt our ID badges. I sternly told an orderly that I wanted to go home; he laughed at me and pointed out that I couldn’t even get out of bed.

(That kind of made me hate him a little, I’ll admit.)

Finally my last surgery was finished. I woke up once again, this time in a hospital room and in great pain.

It was nearly three weeks after I had been taken to the emergency room.

My friends explained to me time and time again with great patience what had happened.

More importantly, my friends also helped me understand what hadn’t happened to me: there was only one surgery and I’d never disappeared for three days. My best friend was neither dead, nor had he married my close friend’s 16 year-old daughter. One nurse I had argued with; another suffered with the patience of a saint as I called him terrible names over and over; yet two other nurses I had enjoyed long conversations with actually never existed.

There had been no dance parties, no illicit drug deals, and my roommate had never lost his job, while mine was waiting for me once I was well. Sadly, I’d also not won the betting pool when one of my coworkers became a father- by giving birth himself.

So much surreality filled my head; but in many ways, the truth that my friends told me was stranger and more unexpected than my internal fiction.

After arriving at the emergency room at the end of September, I had been admitted to the hospital and given a whirlwind of tests and x-rays and EKGs and CT scans.

It was discovered I was riddled with blood clots, as if one day my blood up and decided it wanted to be sausage.

If only I had known what to look for, I would have realized that I never pulled a muscle in my leg, but had actually developed deep vein thrombosis – two in my left leg, and one in my right.

Three days after being admitted to the hospital, I was taken in for surgery. My chest was opened, my heart and lungs were stopped, and in a four hour process a surgeon removed half a cup of blood clots.

One clot nearly a foot long was removed from the saddle of my pulmonary artery, where it dangled, just waiting to break free and kill me. Others were removed from both my lungs where they were developing the heaviest.

A large clot was removed from the atriums of my heart, where it stretched between the two through a hole that I’d had since birth but which had never been detected. The hole was also repaired. Blood thinners were used to destroy the clots in my legs and the unreachable clots in my lungs.

After the surgery, I was moved to the cardiac critical care ward, where the nurses worked on me for an hour before my anxious friends were finally able to visit me. I was heavily sedated and on a respirator; I was no longer able to breathe on my own due to the trauma to my lungs.

The nurses reassured my worried friends that I’d only need to be on the respirator for a few days.

They said this daily for the next two weeks.

Even though I was sedated and restrained, I thrashed around in bed, trying to break the straps holding me, reaching for the tubes coming out of my nose and mouth, pulling off any blanket covering me and any gown dressing me.

(I’m not sure why my angry unconscious mind decided that the best way to lash out was to give everyone a free show … actually, I do understand. I have a body built for clothes and placing it on display was definitely punishing for anyone in the room.)

Herculean effort was taken to keep me alive, and I didn’t help matters. I was considered “extremely sensitive”, reacting poorly and dangerously to sound, movement and touch. Multiple struggling machines were breathing for me. Visitors were cautioned to look but not touch or speak to prevent my vitals from dropping.

(Apparently, even my body is curmudgeonly.)

My health was touch-and-go; some nights staff considered the possible necessity of removing life support and letting nature take its course.

Numerous tubes drained viscous, unsightly fluids from my chest. A tracheotomy was considered. Gentle hands shaved me; fed me through a tube in my nose; cared for my bottom and did all the other things I wasn’t able to do for myself.

I was given “sedation vacations”, where I was allowed to begin to wake; but reacted terribly and was sent back into deep sedation. I remember none of this.

And then, rather suddenly, I started attempting to breathe on my own, even though I was unable to keep my lungs inflated, continuing the need for the respirator.

And then a few days later, again rather suddenly, the tubes came out, no tracheotomy was needed, and I was allowed to wake up.

I wish I could say that I remember it like waking up from a dream in a movie-screen scene, but mostly it was slowly coming to awareness of my surroundings as the fake weaved around the real.

Not only was there cognitive damage, but the powerful drugs I was given during surgery and while on the respirator caused amnesia and confusion. I still have no clear memories after arriving at the hospital, as well as a few days after I was brought out of sedation and extubated.

I was diagnosed with delirium.

A lot of information was thrown at me; very little would stick.

I was distraught by all that had happened; it had really interrupted the well-ordered flow of my life that I had developed.

I wanted to know why everyone was so worried about me. I wanted to understand what had happened to me. I wanted to know why I hurt so much.

I really, REALLY wanted to go home.

It would be a lot longer before any of that happened.

At least the dangerous part was over.

But annoyingly, the hard part had just begun.