ICU Part Two

For the next 5 or so days, my husband was given blood thinners in an effort to thin the clots in his lungs.  We were told that the clots might take years to dissolve fully, and as a result, he was put on coumadin in order to continue the  thinning of the clots, and to keep more from developing.  Before discharge, he was given a doppler test on his legs, to make certain there were no clots there.   We were given the all-clear, and went home.

We were now dealing with the first significant treatment regimen with coumadin.  It required my husband to have his blood tested frequently to make sure his INR (International Normalized Ratio) was right for him.  If the number was too low, his blood would clot, too high and he was at risk for bleeding.  It was tough for him to get accustomed to having to be more proactive about his health, especially at his young age.

We had been home less than a week, when he began complaining of pain in his left leg.  It was difficult for him to walk on it, and was tender to the touch at some points.   Even with our limited experience, we knew that wasn’t normal.  And, of course, pain is the body’s way of telling us something is wrong.  We were puzzled, though, because he was now on blood thinners, so there shouldn’t be a problem.   He had been pronounced clot-free just a week before, so we couldn’t imagine what could be going on.   He made another appointment, this time with another group of doctors.

So for the second time in two weeks, I received a call at school and was told that they had found a sixteen inch clot in his left leg, and he was being admitted into the intensive care unit.  This time they did a procedure where they delivered blood thinners directly into the clot, essentially “washing” the clot with the thinning medication.  There was some danger that as the large clot thinned, it might break off into smaller clots.  At some point they installed an inferior vena cava filter (IVC filter), which is a device made of mesh that will trap blood clots, keeping them from entering the lungs.  We felt some relief knowing that he had this protection.  Once the clot was dissolved to an acceptable level, he was discharged from the hospital.  Once again, we jumped back into our routines, this time VERY grateful that we had dodged some very big bullets.  We celebrated our son’s graduation with a renewed respect for the gift of life and the blessings of family.

 

 

The Struggle to Breathe

The year 2008 would be a year of change as our firstborn prepared to graduate from high school.  We all felt the passage of time, and began measuring it by days and weeks, no longer by years.  It was gratifying to watch our son prepare for life away from home…we felt that we had given him a foundation that made him ready to take on the world, and he displayed the easy confidence that confirmed our feelings.

It was during that time, probably March of 2008, that my husband started feeling tired and ‘winded’ whenever he exerted himself.  We thought he had just gotten out of shape since retirement, and he and I began walking together in the evenings.  He really preferred to exercise alone, but occasionally allowed me to walk with him, and the hills and valleys of our neighborhood provided a very challenging training ground.  I began to be concerned that he was out of breath on a daily basis, and suggested he make an appointment with our family doctor.  Of course he put me off, saying time after time that he was just out of shape, and just needed to work out more.

On a mild spring evening in April, we set off for our walk, heading for the hilliest route.  As we approached the halfway point on our block, my husband suddenly began to struggle to breathe like never before.  He had to sit down for several minutes, trying to catch his breath, while I tried to decide whether to run back home and get the car, or stay with him.  I was not willing to leave him alone, so we very slowly made our way home.  It was during this time that I suggested that he call his best friend, a doctor, the next day….just to see what he thought.  I was desperate to get him to take just one step toward getting medical attention.  This time he agreed.

We had an uneventful night, so I got up and went to my job as a secretary in an elementary school, after getting reassurance from my husband that he would still make the phone call.   I often think of what our parallel mornings were like on that day….I was blissfully going about my workday, while my husband was alone, dealing with his most difficult medical experience so far.  After making the phone call, his friend suggested that he go see our family doctor.  They took him to an exam room and checked his blood oxygen level, which registered in the 60’s.  Normal levels are above 90.  The doctor immediately ordered a CT scan.

It was then that our parallel mornings converged into one blur:  I had just sat down for my lunch when my phone rang.  It was a radiology technician who bluntly told me that they had found pulmonary emboli….blood clots, in my husband’s lungs.  There were several of them, and at that moment he was being transported by ambulance to the nearest hospital.

I don’t know what I did or said, but I was suddenly surrounded by teachers.   Someone put my lunch away, and I was led into my boss’ office, where I told him my husband’s situation.  He offered to drive me to the hospital, but I felt I could make it there by myself, and within minutes was on my way.

The next several days were spent in the hospital’s intensive care unit, where he was given heavy doses of blood thinners in an effort to dissolve the blood clots.  At the same time, he was instructed to move as little as possible, to keep the clots stationary.  I felt my own blood run cold as I realized the seriousness of what we were dealing with:  one traveling clot could kill him.

Starting Over

After spending all of our adult life with one set of goals and ideals, as in service to our country, there is really no preparation for beginning the next phase.   My husband attended all the retirement briefings, and we were supplied with information on adjusting to civilian life.  However, when real life is not covered in any of the instruction manuals, how does one really adjust?

Through the years, I had developed a set of criteria for where we would spend our years after the Air Force.  My heart longed for a small town, with tree-lined streets, a flag perched on a pillar of each wrap-around porch, and white wicker laced with ferns.  The reality is that we had lived in Washington, D.C., the Rocky Mountains in Colorado, near Sea World in San Antonio…places where people love to visit, and where there was always something to do.  It would be a tough sell to convince two children to live in a quiet place where there were few activities with them in mind.   We found a compromise by living in a small town near a big city.  To sweeten the deal, I had a job offer, and we found a foreclosure fixer-upper in a very nice, established neighborhood.  The plan was that I would be the sole breadwinner while my husband put his home renovation skills to work on our new home.  

As is sometimes the case, those particular plans did not come to fruition, and we had to scramble around for a Plan B.  After all my efforts and training, and getting licensing to start my new career, my job offer fell through.  So we both renovated our home, and got our boys settled into school.  We looked forward to Mother’s Day, as it would be our first holiday to spend with our Moms, without having to plan a cross-country trip.

The events of that day were totally unexpected, and devastating.  During lunch, we received a series of phone calls  informing us that my sister-in-law, my husband’s oldest sister, was critically ill.  The waning hours of Mother’s Day, 2003, would find us at the hospital in complete shock, as we learned that there was nothing doctors could do to save her.  I’m not sure when it happened, but my husband was by her side when she left the bonds of earth.  

To say that he was affected by her death was an understatement:  the two had been very close, despite being twelve years apart.  He had spent many summers at her house, after she was married and began her family.  She had always been like another mother to him, and her loss plunged him into a major depression.  He was essentially immobile, and spent nearly an entire summer bedridden, while the boys and I tried to start life in our “new” home.   Although we still had lots of work to do on the house, by this time we were able to live there, making renovation a bit easier.

In July, we discovered that we needed to renew our tags on the vehicles.  Guess what was still in our household goods, somewhere between our new home and Texas?  Our car titles!  So, a good one to two months before we were ready, we had to have our household goods delivered.  We had to scramble to get new carpet put in, so our furniture could be moved in.  The presence of massive numbers of boxes only added to his depression, and it was a difficult time to hold everyone together.  I felt so terrible that the boys essentially spent a summer on the couch, while I tried to unpack, renovate and do whatever I could to take the pressure off him.  

Sometimes I feel that we failed miserably with keeping things afloat for the sake of our boys.  We were just trying to make it through, dealing with the clutter of our lives and the clutter that crowded our hearts and brains.  It was an exhausting time.  It is only just now dawning on me that my husband may have been feeling the effects of his illness in between the visible symptoms.  He was never very ‘energetic’…a fact that drove me crazy.  An early bird myself, I could accomplish a day’s worth of work before he even made it downstairs for his morning coffee.  I could never understand how he could sleep his days away.  Now I wonder if he just felt lousy all the time.  I’m not sure we’ll ever know if his lack of energy, and possibly how profound his depression became, was a symptom of his APL.

Eventually, he became well enough to find a job, and embarked on his second career.  I found work as a Substitute Teacher, and we settled into the familiar routine of school, baseball, work and improving our home.

What would come next was still a few years away, yet it would prove to be a wake-up call that would shake us to our core, and make us see this illness for the threat it really was.

The Diagnosis

The next few years were uneventful, health-wise.  We all survived the Y2K worries, with no computer mishaps to speak of, and found ourselves wondering what all the fuss had been about.   I don’t know why, when we view our lives through hindsight, we usually wind up kicking ourselves, but it’s true.  We want to jump back in time and get in the faces of our young, inexperienced selves and scream “Wake UP!!!  This will be a BIG problem later on!!!  WAKE UP!!”   Would it affect the outcome in a more positive way, perhaps given us more time between health issues, or made the quality of his life better?  In reality, we just think back and shake our heads, thinking, “If we only knew back then…”  What is the purpose of these episodes, and does it teach us to try to employ hindsight to our everyday lives?  Are we calling upon hindsight to just jump on in and take over, so we don’t have to weigh things on our own?  I don’t know why we torture ourselves.   At any rate, with the information we had at the time, we had no choice but to do what we could in the raising of our boys.  I guess life is like that.

In the Spring of 2001, my husband received orders to Randolph AFB, Texas.  So we left the beautiful state of Colorado, and moved our little family to a suburb on the outskirts of San Antonio.  The following Fall, our oldest began middle school, and our baby began kindergarten.  We began our regular routine of baseball, school, and just enjoying our family, while my husband settled into his new job, at what would be his last duty station before retirement.  The nature of my husband’s work meant that I could not know a lot about his job, or things we was working on, and I was fine with that.  I took a lot of pride in sacrificing my perceived need to know things in order to give our Country a capable, loyal Service Member who could focus on what he did for the good of this great country of ours.  I looked at it as my way of serving, too.  There will always be things that I will never know.  Or, as we like to say, I can read about it in 50 years when the information is no longer classified.

On that fateful day of September 11, 2001, our world, and that of our beloved nation, was torn apart as we watched the tragedy unfold in New York City, the Pentagon, and in that lonely field in Pennsylvania.  Of course, the events of the day meant that my husband’s schedule immediately went into overdrive at work, and little things about his health might have been ignored in the interest of national security, naturally so.  I do not remember any complaints of his that might have served as warning signs, I just remember the phone call, and that blinding feeling of panic and fear, as one of his co-workers explained to me that he had lifted a projector and promptly passed out, and was being treated at the clinic on base.

Later he would tell me that he had had episodes of not being able to concentrate that day, and his vision was not right…whacked, I think was the word he used, before he slid into oblivion.  Once again, he was sent to a neurologist at Brook Army Medical Center, and this doctor, after reviewing his records, ordered a Trans Esophageal Echocardiogram.  The results of this showed nothing abnormal, however, the doctor was intrigued by his medical history thus far, and vowed to find out what his condition was “if it’s the last thing I do!” 

Now, a new round of tests was ordered.  I’m not sure if the doctor was re-running tests for comparison, or testing for new diagnostic markers, but one day my husband received a call from the neurologist, and went in for the results.  At any rate, the doctor finally had a diagnosis for all the mysterious symptoms he had suffered over the last several years.  It was a condition called Lupus Antiphospholipid Antibody Syndrome.  Despite its name, the disorder is not a form of Lupus although it is an auto-immune disorder.  

This doctor then presented my husband with the first way to treat his condition.  Fortunately, aspirin therapy was acceptable in his case, and many people were doing it back then, as now, for heart health.  So he began an aspirin regimen.  In the Spring of 2003, after a distinguished career with the United States Air Force, my husband retired.

The Revelation

I’m not sure where to even go with this.  My son has told me he doesn’t like being at home anymore.  My heart breaks for him, and at the same time, it takes the wind right out of my sails….until this point, despite my efforts to initiate talks with him about his dad, he has seemed fine.  I feel blindsided by this:  it is taking all I can do to care for my husband.  Now I have to pull resources out of somewhere in order to help my son work through his own issues.  We both feel that if my husband can just get over the cough, we can deal with the low-sodium, low-fat, low-sugar bandwagon that we have all jumped on, as well as the confusion, frequent miscommunication, forgetfulness (well, let me think about the last three), medication management, appointments, tests, etc.  The bootstraps that I am relying on to pull myself up are getting weaker by the minute.

Daily we are reminded that dad is sick…it is like a cloud that never goes away…no matter how hard the rain falls.  Even in an average moment, I’ll look at his constantly swollen feet and am reminded that his precious heart, at 35% function, is working as hard as it can, and he is sick.  I’ll explain to him for the third time, why we are doing this instead of that, and I am reminded that he is sick.   When he is sitting on the couch with his head in his hands, I know that he is trying to suppress his cough, and he is sick.  The medicine bottles that are spilling over the baskets on his dresser remind me that he is sick.  The blood pressure cuff, the oxygen condenser…all remind me that the life we used to have has been replaced.

The silver lining:  the revelation from my son gives me the notion that we can support each other.  It certainly helps me to verbalize thoughts and feelings, so perhaps I can encourage this in him as well.  And I am blessed that since he is nearly an adult, there is no need to sugar-coat my own thoughts and fears.  I learned by default today that his thoughts and fears are exactly the same as mine.  Tonight I will say a prayer that, by talking to each other, we can at least bandage the wounds, eventually bringing about healing.  And we will spend a little time each day playing verbal tennis, no holds barred, so that we can sort out the anger from the sadness, and reveal the hope.   Maybe then, we can take the focus away from the constant reminder that dad is sick, and remember the true blessing:  he is still with us.