A Clear Plan

At this moment, we are in maintenance mode.  With everything that has happened, the blessing is that we have learned hard lessons with scary, but so far non-catastrophic results.  My husband and I made the difficult decision in late Spring that he needed to go on disability.   It was taking every ounce of strength and energy that he had in order to get through the day and he would not be able to keep doing all he was doing and still take care of himself.  When we notified each of his doctors, they  marveled that he had been able to keep up as long as he had.  This reaction solidified that we were doing the right thing.

As with everything he’s had to either give up or alter, he’s had to come to terms….usually fighting tooth and nail to keep his freedoms.  When his Pulmonologist said he needed oxygen therapy, he resisted.  When I suggested that he just ‘try it’ and see if he felt better during the day, he agreed, BUT “only for a few months”.  I quickly learned that my role is to gently push him towards what he needs to do, but in such a way that he is still calling the shots.

The Monday after his last day of work, we began working at finding the source of his cough.  During the Summer it had become progressively worse, sometimes to the point of him throwing up or passing out.  For two months, our days were filled with diagnostic tests and doctor’s appointments.  A CT scan revealed that his lungs were filled with spots, and he was promptly scheduled for a bronchoscopy.  His Pulmonologist went over the results with us, and thankfully, they were not tumors.  Since we had not met with him between the CT and bronchoscopy, we had no idea that he suspected tumors, so we were a bit surprised.  However, not knowing this meant that we were also not worried.  What he did suspect was that my husband had  Bronchiolitis obliterans with organizing pneumonia (BOOP).  It is a rare lung condition in which the small airways (bronchioles) and air exchange sac (alveoli) become inflamed with connective tissue. (from the American Lung Association.  http://www.lung.org/lung-disease/bronchiolitis-obliterans-organizing-pneumonia/)

Unfortunately, the recommended treatment with Prednisone caused him to be hungry all the time.  Compounding this was his fluid intake, which helped his cough some, but also caused swelling.  At some point, excessive fluid in his intestines rendered his Lasix ineffective.   In early November, he was hospitalized with acute congestive heart failure.  Ten or so days of fluid removal made all the difference for him, and he was released right before Thanksgiving.

And so, our clear plan is:  VERY low sodium intake, VERY careful fluid restriction.  He weighs daily, and every evening he flexes his toes for me.  As long as we can see the tendons in his feet, we feel we’re on the right track.  It feels good to be in control of what’s necessary in order to keep him as healthy as possible.  It has been a long journey to acceptance.  However, acceptance has also been the gateway to peace, and we have learned that by accepting, we are now open to seeing the blessings in each day, and being thankful for what he CAN do.

Events from the year….

I would love to be able to say that the last year has been uneventful.  There have been many adjustments and little quirky things that have not been fully understood.  After the defibrillator was implanted, my husband’s platelet count dropped as it had after his stent procedure in 2011.  He had needed steroid treatment, and it was thought that being weaned off them too quickly had caused the platelet drop. It took months for his counts to become normal again.

There were plenty of heart-stopping moments, like the morning a couple of weeks after the surgery that I went in to wake him and he was covered in blood….after a thorough exam, we decided he must have popped a stitch, and thankfully the bleeding had stopped on it’s own.

The discovery of a sliding hiatal hernia and significant esophageal erosion prompted more testing and talk of surgery to repair it.  Of course, each time surgery is suggested for my husband it makes my blood run cold, and we carefully considered if the risk was worth the benefit.  Not only does he run the risk of hemorrhage because of the blood thinners, he runs the risk of developing a clot, which could then travel to his brain and cause a stroke, or to his heart or lungs.

In March of this year what we thought was a stomach virus turned out to be an inflamed gall bladder.  He had only vomited a few times, yet by the time we got to the ER, his heart rate was in the 140’s.  Over the next few hours it continued to climb, maxing out in the 170’s.  It took an entire day to get him stable enough for surgery.  Of course, this time the risk did outweigh the benefit, and they had to proceed.  The surgery was supposed to take about 45 minutes, including prep time.  When I was paged after only 20 minutes, I thought the worst.  However, we got the news that everything had gone smoothly, and we waited to see him in recovery.  This episode taught us that he shouldn’t vomit if it can be helped, and he was sent home with an anti-nausea medication.  And we waited for the next issue.

Practice Makes Perfect

When I say ‘practice makes perfect’, it does hold a bit of morbidity.  I tell myself that I was just thinking of worst-case scenarios….going over events in my mind and how I would react to them.  Telling myself that I was preparing for something that I would react instinctively to, a reaction that would keep me from freezing helplessly.  One cold December morning it would make all the difference.

In the early morning hours, 2:30a.m. to be exact, on December 1, 2012, I was awakened from a sound sleep by my husband falling over on me.  He sometimes sleeps upright so that he can breathe better, and it keeps him from coughing so much.  I thought he was sitting up and just tipped over onto me.  So I gently shook him, knowing that since he is such a light sleeper he would immediately sit up and apologize profusely.  Nothing.  So I shook him a little harder:  nothing.  The alarm bells started sounding in my brain and I immediately wiggled around, using my feet to push him off me so I could quickly roll off the bed and turn on the light.

The image is seared into my memory, destined to be there forever:   my sweet husband, lying pale and motionless, eyes closed, with an eerie stillness about him.  My eyes went immediately to his chest….there was no movement:  he was not breathing.  I jumped onto the bed, trying to figure out how to pull him to the floor without hurting him.  I knew trying to do CPR on the bed would be pointless, since it would provide no resistance when I needed to do hand compressions.  And this is where my ‘practice makes perfect’ mantra would begin:  I would have to try to resuscitate my sweetheart while calling 911.

Thankfully, the act of my trying to pull him onto the floor caused him to give a small gasp and open his eyes.  I began talking to him as if he were a baby:  this singsong was the only way I could communicate without crying, or perhaps it would disguise my crying, shaking voice.  I told the 911 dispatcher that he was responsive, and I would now go downstairs and unlock the front door for the emergency personnel.  As I talked to him, I got his medication card out of my bedside table…another of my worst-case scenario preparations.

Within minutes, a police officer was coming up the stairs.  Soon after, the room filled with paramedics, and they began asking me what happened, his medical history, IVs were inserted, they read off his medications, I showed them his MedicAlert bracelet indicating his blood disorder.  There was tons of activity swirling around, yet it all seemed to be in slow motion….I think it had everything to do with the calmness of the paramedics, their kindness as they talked to us both.  There are several hospitals in the area, so thankfully I also remembered that I needed to request that he be taken to the one where his doctors have privileges.

He had two more episodes of syncope in the ambulance on the way to the hospital…thankfully he did not stop breathing again.  In the emergency room, he had two more episodes:  this time he vomited with each episode.

I am not sure there was ever an explanation given as to why this occured, but the cardiologist on call that night speculated that he would need a defibrillator.  On Friday, December 7, 2012 that is exactly what happened.  Despite his history of complicated surgeries, everything went without incident, and he was discharged just a few days later.

With renewed hope and happiness, I threw myself into preparing for Christmas.  I had spent the last week watching people prepare their homes for this wondrous time of year, all the while wondering if we would have anything to celebrate.  Late one night I drove up the driveway, and things seemed different, although I couldn’t really put my finger on it.  As I backed down the drive the next morning, I noticed the wreaths on our front doors.  Our sweet friends next door had put them up, and put away our harvest decorations.  I sat at the road, crying and admiring our beautiful wreaths, with the knowledge that if I didn’t have the heart to do anything else, I would see the evidence of Christmas Spirit each day during this difficult time.  When all was said and done it truly became the best Christmas ever.

 

Stroke

At first his words didn’t register….I didn’t understand as he tried to tell me how he could not move his left arm and his left leg.  He couldn’t flex his fingers, or bend his foot at the ankle.  We mentioned it to one of his doctors and, after yet another MRI it was determined that he had had another stroke.  It had likely occurred when a clot developed in his arm after a routine blood draw while he was on the respirator and traveled to his brain, resulting in the stroke.

He seemed so small and lost, sitting in that chair in his ICU ‘room’.  He was extremely quiet, and I knew what he must be thinking.  He had always worked, and took great pride in providing for his family.  I knew he was worried about how we would make it if he had to leave his job.  I immediately began telling him how we would be just fine, I’d work more hours, we’d cut corners…..I desperately needed him to be positive, and not become depressed.  He was adamant as he said, “You are NOT going to make me quit my job!!”  I told him I had no intention of doing that, I just wanted him to know that we would survive if it were necessary.

The first few meals I spoon fed him.  Then they brought him pork chops.  It was a cruel twist that he is also left-handed, so it was very painful to watch him maneuver the knife and fork with his only cooperative hand being the weaker one.  He was determined to learn, however.  After a few more days he was ready to go to a regular room.  As we waited for Transport to take him to his room, we received the news that his platelet counts had dropped to 25,000, from about 250,000, and doctors were concerned that it had something to do with his blood thinner.  Up to this point I had been stoic around my husband at all times.  With his condition being resistant to coumadin, there weren’t many other options in the way of blood thinners, and as I pondered the horrible consequences of him having NOTHING to thin his blood, I began to panic.

I don’t recall the treatment they used…likely it was Prednisone, but gradually his platelet count began to climb again.  He began receiving physical therapy on his arm, hand and leg, and slowly began taking walks.  He had gotten into a routine with the physical therapist where they would walk around the perimeter of the 3rd floor.  One Saturday SHE was the one keeping up with HIM, and she mentioned that he was getting so much faster.  “I have to” he told her, “it’s halftime!!”.  I knew then that he would be fine.

His at-home therapy included working on his fine-motor skills, since he needed to write and use tools, etc. for work.  He spent hours writing, and had this little machine that would provide resistance when pressed down by his individual fingers.  He was constantly exercising those fingers.  Before we knew it, he was making plans to go back to work, and for the next year, we settled into a new normal, as we dealt with the limited mobility and memory issues.  His lowered heart function also meant that he tired very easily.  When he came home from work every evening, he was exhausted.

The end of November, one year later, I would learn the value of ‘practice makes perfect’, and we would begin another chapter with yet another crisis.

 

Sedation and Gratitude

It is hard to describe the emotions:  Fear, most definitely.  Lost, absolutely.  The person whom I had relied upon for over half my life was not able to help me if the car broke down or if one of our sons got hurt.  Even when he was in Korea, we could at least keep in touch via e-mail.  For the first time ever, I would have to rely totally on myself for life’s little emergencies.

Once again, no matter what else was going on outside of the hospital, at 10:00, 2:00, 5:00 and 8:00, I was in the ICU.   For the first several nights he had two nurses caring for him.  It was gratifying to watch how they were so coordinated in what they did.  My oldest son, who always has a million questions, was true to form:  he asked if the blood transfusions that his dad received were already thinned….I had never given that a thought.  The nurses were always so patient with him as they answered every question.

It was during this time that I decided, in order to keep my sanity, I needed to search for gratitude.  I began each day with a grateful heart, being thankful that we had all made it to another day.  I learned how to keep up a positive front for our boys, telling them it would be all right…when inside I had no idea if it would be or not.  Over time, I began to believe it myself.  I was grateful for the random kindnesses of strangers…..the man who took the parking space that I was waiting for:  I had only 10 minutes to get to my husband’s bedside, and when he quickly moved into my space, the frantic look on my face as I honked furiously prompted him to back out and look for another space.  Anyone who gave a kind word or a smile was a recipient of my gratitude.  I then ended each day being grateful that we had all made it through.

There were difficult times:  when they had to let him off the sedative for a ‘sedation vacation’.  He would try to get the tube out of his throat by gagging, or trying to cough it up.  It was very difficult to watch.  Sometimes when I was alone in the middle of the night, it seemed like I was the only one whose life was falling to pieces.  It’s a very lonely feeling.

After what seemed like weeks (it was 5 days), he was finally weaned off the respirator.  I will never forget the look on his face as he came out of sedation.   He had gone in for a routine procedure and 6 days later wakes up, not realizing how hard he had fought, how hard the many dedicated doctors, nurses and staff worked for this day.  I could read his face as if he spoke the words, and I automatically said “the boys are fine…we are all fine”.  He nodded his head, and the relief showed in his face as he closed his eyes for a brief rest.

When I came to see him at the next visiting cycle, he was sitting up in the chair in his ‘room’.  I was amazed to see him up so soon.  As I walked over to give him a hug, he looked at me and said, “I can’t feel my left side”.

Stents and Complications

It was a huge relief to find that they would be able to put stents in the graft that hadn’t ‘taken’.   We had to wait a bit for my husband to get his strength back, and so, at a follow-up visit to his cardiologist almost two months later, it was decided that he would be put on the schedule for the procedure.  It just so happened that it could be done the next day, and so we agreed that sooner was better.

The procedure itself was routine.  Afterward, he was brought into a room on the cardiac floor to recover.  I noticed that his coloring wasn’t too good…he still had a grayness to his skin.  As he came out of the anesthesia, he began to complain of chest pains, and told me he was going to be sick.  I noticed how clammy his skin was, and his nail beds had begun to turn blue.  By this time, his cardiologist had been called, and the room suddenly filled with people. 

Thankfully, his cardiologist knew immediately what had happened…part of the artery had collapsed while he was putting in the stents, and when he inflated it, it had stayed open.  The artery must have closed again, and it would be simple to go in and stent that area.  So, they take my husband back to the cath lab, and again I wait, with my cousin by my side. 

It seemed to take forever, and indeed, it took much longer than it should have.   When one of my husband’s doctors came to talk to me, I discovered why.  When his cardiologist went in to stent the collapsed area, my husband developed a clot, which broke loose and went directly into his heart.  It damaged a great deal of his heart muscle, and it would be difficult to tell if he could regain some of his heart function.  He was in critical condition, and would need to stay on the respirator until the next day.

I felt so sick inside, and was struck with a blinding fear like I had never had before.  For the first time ever, I understood that my husband might die.  I sat there, wrapped in a blanket, and listened to life go on around me.  Somewhere in the depths of the hospital the Lullaby Song played, announcing that the world had yet another new member.  While MY world was teetering on collapse, others around me had the NERVE to laugh and be happy, have babies and continue their lives.  I could not think…I was comprehending nothing but the fact that my husband might not come home to me and our sons. 

It was the longest night I had ever lived, yet when I saw my husband the next morning, he did look better.  Once I was told that he would come off the respirator, I called his parents to let them know how he was doing.  I was in the waiting room with some family members not five minutes later when one of my husband’s doctors came in to talk to me.  His doctors felt that his heart was too weak for him to breathe on his own.  They decided that if he spent a few days on life support and let machines breathe for him, his heart would have the best chance to improve.  With my own heart heavy in my chest, I went back in to see him again, before he was given a sedative and sent back into sleep.

Medicinally Induced Shenanigans

About the 4th or 5th day post surgery, my husband started to come out of some of his heavier medications, and we were able to finally talk to each other.  Our first conversation went like this:

He:  “Why am I here?”

Me:  “You had a heart attack and they had to do a triple bypass”

He:  “A HEART attack?!?  Oh my….oh no!  OH NO!!  I am so stressed!!  I’m having chest pains!!  Oh NO!!!”

Very.      Long.        Pause…….

He:  “Now, why am I here?”

Over time his doctors began to be concerned that he couldn’t seem to absorb what had happened.  A certain amount of retention failure is normal due to the medications, but his seemed out of the ordinary.  He was taken in for an MRI, and a psychologist was called in to evaluate him.   Nothing was found, and eventually he began to improve.

During this time I discovered that the combination of pain medications, the residual anesthesia and general trauma of surgery would turn my normally agreeable husband into a belligerent Man-Toddler.  One night, in his delirium, he decided that he no longer needed his central line…and so he removed it.  Himself.  The combination of blood thinners and his layman’s removal technique had caused quite a stir in the ICU that night.

Like the mother of a toddler at preschool pick-up time, I was regularly met with stories of his misadventures of the night before.  He was not a willing participant in the use of the spirometer, and developed pneumonia as a result.  I felt horrible that I had not pushed him enough to use it, and now we had another hurdle to overcome because of that.

Despite all of the challenges, around the 7th or 8th day, he seemed strong enough for a regular room.  It was a proud moment for us, and we were giddy with excitement as we waited for someone from the Transport team to take him to the cardiac floor.

As he got settled into his new room, the nurse came in and took report from his ICU nurse.  It was during this time that he began having difficulty keeping his oxygen levels up, and I could see the fear in his eyes as he began to be in some distress.  Suddenly the room filled with people as they prepared to take him back to ICU.   They weren’t going to wait for Transport to take him…..he needed to go back…..immediately.  They began yanking tubes out of the wall and flew down the hall with my husband.

This episode bought him some time with a large oxygen mask that fit over his nose and mouth.  He did not like it, not one bit.  As long as he was calm, all was well.  If he got agitated, one quick swipe of his hand and he’d have that mask off faster than a Major League catcher.  His nurses were constantly watching him out of the corner of their eyes….when they saw that hand go up, they would say….”Mr. Purnell…..”  He would then smile sweetly…..and scratch the side of his face.

One day we had a showdown:  I had fought him all morning to keep that mask on.  He kept taking it off.  One of his nurses had come in to adjust his oxygen, just as my husband had thrown off the mask for the hundredth time.  The nurse held out his hand.  My husband gave him the mask.  The nurse put a nasal canula on him and left the room.   My 47 year old belligerent Man-Toddler husband looked me square in the eye and stuck his tongue out at me.

We graduated to a regular room a few days later, with no complication.  We were still dealing with some of the effects of the medicines and he would often test his boundaries, but each day got better.

Near the end of this hospital stay I got some news that would let me know that our journey was far from over:  tests showed one of the grafts hadn’t taken.

 

10:00, 2:00, 5:00 and 8:00

So it all comes down to this:  our world was changing and it began in a little room in the surgical Intensive Care Unit.  I watched my husband breathe with the help of a machine, still unconscious from the medications, with an enormous tube pumping fluids out of his chest.  The room suddenly got really hot, and I fought the urge to faint.  Thankfully, my cousin was there, keeping me upright.  She suggested we go get a bite to eat, and I realized I hadn’t eaten all day.  I was reluctant to leave, but my husband’s nurse assured me I could come back in any time.

After eating and another visit to the ICU, I eventually settled into my room, where I tossed and turned for hours.  All kinds of horrible scenarios were spinning around in my head and sleep would not come.  Finally I could stand it no longer, and went to the ICU again at 5:30am.   True to his word, my husband’s nurse allowed me in.  Although he was still sedated, at least I was reassured that he was resting, and was able to go back to my room and sleep soundly for a few hours.

The first morning after surgery I was allowed into his room pretty liberally.  However, eventually my days began to revolve around the following times:  10:00, 2:00, 5:00 and 7:00.  No matter what happened during the day, at those times I was standing at the doors of the ICU, waiting to be let in.  A total of 2 hours each day.  I treasured those brief times and would move Heaven and Earth to spend every moment of them at his side.

I was able to spend a second night at the hospital.  Late on the third night, my youngest son and I arrived home….and discovered that our air conditioner was not working.  My in-laws were due to arrive from out of town at 9:00am the next morning, and my sister-in-law was also coming in later that day.  Nothing could be done at that hour, so we each sweltered under our ceiling fans, with wet washcloths over our faces.

Thankfully I was able to get someone to come right over early that Monday morning to fix the ac, and when I told him why I needed to leave by 9:00 (see paragraph above), he waived his rush fee.  As I waited for him to fix the ac, I decided to make coffee for my guests, only to discover that the coffee-maker was broken.  Afraid to touch anything else, I sat in my sweltering home and waited for 9:00am.

When dealing with a stressful situation, I think it is easy to compartmentalize things…maybe it is the body’s way of protecting itself, to keep from being overwhelmed.  You are suddenly able to super-focus, to do only those things that will carry you through the situation.  And you do it almost automatically.  The unfortunate consequence is that there will be important things that are missed.  For instance, the day after my husband’s surgery our son turned 21.  Several days after that, a beloved aunt of mine passed away.  It would be several weeks before my son got his birthday gift.  I was unable to attend my aunt’s funeral.  There was understanding and grace for my focus being on my husband….I would begin to pay more attention to these acts of kindness in the upcoming weeks and months, and they would help me cope.

The Big One

The annoyances started out small, and in a comedy of errors that could only happen to us, we were once again blindsided in the Summer of 2011.  To further complicate matters, our attention had been focused elsewhere when the proverbial rug was snatched out from under us.  This time it was myself who had the medical issue.

Early in the Summer of 2011, I underwent brain surgery to occlude an artery that was feeding an abnormal cluster of blood vessels close to my left ear drum.  This meant that I was hearing my heartbeat non-stop (called Pulsatile Tinnitus) for nearly two years, and I was starting to get a little loopy from the strain, in addition to the dizziness and fullness in my head.  It was also something that could have led to a brain aneurism if not corrected.  I would soon learn how important it was to have it taken care of when I did.

We also had a couple of home improvement projects going on, and helped our niece move, all within a 3 week span of time.  So when my husband began complaining of a pulled muscle across his chest, we knew it had to do with either putting up the beadboard ceiling in the den or moving household goods.  For several days, he medicated with ibuprofen.  On the morning of July 22, he woke up and got ready for work.  He was irritated that the ibuprofen was not working on his muscle strain, and did not look like he felt well at all.

As I was clearing the kitchen, I heard him in the living room and went to check on him.  He was trying to bend over the back of the couch…and then tried to lean across the seat of the couch.  I did not have a good feeling about any of this, and asked him what he needed.  When he said that he just wanted the pain to go away long enough so that he could think of what to do, I knew I had to take over.  I told him to get in the car, and for once he didn’t argue.  In a blinding rainstorm we drove to the emergency room.

I was really concerned when they took him right away, although it still took several hours to get all test results back.  Eventually, the doctor told me that his cardiac enzymes were elevated, meaning he was either having a heart attack or had recently had one.  He needed to perform a heart catheterization to find out what was going on.  This news hit me like a wall of bricks, and I remember very little of what he told me after that.

The walk from the emergency room to the 3rd floor cardiac waiting room was a blur.  I could not believe my husband was having heart issues…at the age of 47!  I ran into one of my cousins, who was visiting someone on the cardiac floor,  just outside the 3rd floor elevator.  That we happened to be in the same place at the same time was a miracle in itself.  In the short walk to the waiting room, I told her why I was there.   In the meantime, my cousin who lives close to us had picked our youngest son up at home, and was bringing him to the hospital, while I frantically tried to call our oldest son to come to the hospital.   My family, whom I have known and loved since before our lives began, rallied around me…bringing my child to me, and encircling us in a tower of support that we would desperately need, as if our lives depended on it.

This sequence of events only took a few minutes, and with the ringing of my phone everything froze:  it was my cousin’s husband, telling me that the surgeon was coming in to talk to me any moment….and telling me to sit down.

 

Resistant Times Two

It is no exaggeration when I say that my husband was resistant to his first consistent treatment for APS.  When taking Coumadin, the patient has to have regular checks of his INR, or International Normalized Ratio, to make sure the blood is thinned properly and clots don’t develop.  It was already like pulling teeth to get him to the doctor, as it is for most men.  Now try telling him that he had to go to the doctor every few weeks.   He fought it like a belligerent toddler, and it became the main source of our tension over the next year.

Approximately one year after beginning his Coumadin treatment, my husband felt the familiar signs of another blood clot.  It was also in his leg, and it was an impressive size, at around 14″ long.  His doctors were baffled that he could be on blood thinners and still develop a clot.

I had lost my job the year before, while my husband was still in the hospital for the first blood clot in his leg.  The timing of my job loss was scary and very discouraging, since I didn’t know what we were in for with everything that had happened in the previous few weeks, and whether he would be able to return to work or not.   I missed my co-workers terribly, and the students as well.  The silver lining was that I was able to spend more time with him at the hospital.

After some complicated blood tests it was determined that the strain of APS that my husband has is resistant to Coumadin.  So despite an entire year of taking blood thinners, his blood continued to clot.  Consequently, we were very relieved when they found that Lovenox would work for him.    He was also relieved that he didn’t have to have his INR checked while on Lovenox, so it reduced the need for frequent doctor visits.  The downside is that he has to give himself daily injections, something that he does with very few complaints.  He was able to return to work, and we resumed our lives.  For a time we co-existed peacefully:   APS and Lovenox worked in clot-busting harmony.  It would be two more years before our journey would take a different turn and become more complicated than ever.