Ken's Ordeal Part 3: Finally Someone Listens and the Hospital Stays Begin

If you want to start at the beginning, click the link to "Ken's Ordeal" at the bottom of this post or in the sidebar and scroll down to Part One.

It took about half an hour to get to Sheboygan Memorial from our home.  It was a long half hour, and I kept glancing over at my husband as I drove.   He had an "episode" on the way to the hospital.  I felt chilled to the bone, and it wasn't just due to the wintry mix of snow and wind. 

"Please, please, let us be heard.  Let him be admitted...." I prayed silently, and then out loud.  Ken was, by this time, in terrible pain. His shoulders, back and hands were all hurting badly and both hands were now swelling to a marked degree.  When we arrived, I ran inside and retrieved a wheelchair and returned to the car to help Ken ease into the chair.

Soon I was talking to a triage nurse.  Ken could barely speak.  "He's getting admitted," I said flatly.  The nurse wisely refrained from comment.

We spent all day the Emergency Room.  Eventually, Ken was hooked up to various monitors.  After a while, it happened--he had an episode.  A nurse was in the room to note that his blood pressure spiked alarmingly and then dropped.  His oxygen level plummeted.  His heart pounded at an alarmingly rapid and uneven rate.

And it all showed up on the monitor.  And he was admitted for observation. 

The hospitalist (a doctor who specializes in caring for patients in the hospital) on duty was a motherly-looking middle-aged woman.  I liked her instantly.  She listened carefully.  She asked smart and probing questions.  She looked alarmed at hearing that these episodes had been occurring for years.  She said, "You are clearly very sick, Mr. George.  We need to get to the bottom of this.  We will be having several different specialists talk with you."

Yes. 

At this point, the episodes were happening again and again and it seemed the slightest exertion was setting them off.   Ken said they were an indescribable but very uncomfortable sensation that moved from his feet upward, reaching his chest and causing pressure, the heart symptoms, shortness of breath, sweating, and then an extreme, pounding headache. We now knew that his blood pressure was spiking alarmingly and that, along with the tachycardia, was causing great risk of stroke and heart attack.   Ken's pain increased steadily.  He was admitted to ICU and started on a morphine drip and other drugs. 

Ken's endocrinologist, upon seeing that an adrenal tumor had been discovered a few days prior, finally made the connection.  The tumor, called a Pheochromocytoma,  might be the source of the episodes.  Adrenal tumors are not all that uncommon, but the one Ken had been suffering with for years was a very rare type indeed.  The endocrinologist told Ken, "This is really a one-in-a-million diagnosis."  One of the family practice doctors at the clinic later told me, "There are nine of us with offices in this hallway.  Together we have many decades of experience.  Not one of us has had a patient with a Pheochromocytoma."

The "pheo," as it turned out, had been lurking for years.  (Ken and I both believe it was doing its dirty work long before the day, eight years ago, when he had what seemed like a heart attack and called 911.)  Pheos can cause a variety of symptoms that mimic other problems.  I later discovered, while doing an Internet search, that an episode of "House" had centered on a man with a Pheo. 

The pain in Ken's back turned out to be a dissolved lumbar vertebrae, possibly due to osteoarthritis caused by the tumor.  Doctors disagree about whether adrenaline can cause osteoarthritis.

The pain in his hands and shoulders remained a mystery, but no one was worrying much about those issues.  The endocrinologist said he should not sit, not stand, not move more than absolutely essential.  The only solution to the many symptoms: heart tachycardia, extreme blood sugar swings, high blood pressure, shortness of breath, sweating, dizziness....was surgery.  Hopefully the adrenaline rushes he had experienced were also the cause of the pain he was enduring. 

But, we were told many times, the surgery is very risky.  Any attempt to remove the tumor could result in an "adrenal storm" of hormones that could cause stroke, heart attack, or instant death.  Attention was focused on keeping Ken alive on a cocktail of medications, and he spent a week in the hospital.  Then he was transported by ambulance to St. Luke's Hospital in Milwaukee.  He was informed that he would be having the tumor removed one day, and the next day he would undergo a simple surgery to inject a sort of "cement" around the dissolved vertebrae.  We waited, with some anxiety but mostly with relief that the tumor was going to come out and he would soon be on his way to recovery.

When he arrived at the Milwaukee facility he was told that there was absolutely NO WAY he could have the dangerous surgery until he had been stabilized on the cocktail of beta blockers and other medications for at least a month.   He spent a week in St. Luke's, being seen by several specialists.  An orthopedic surgeon told him he would need a spinal fusion.  A rheumatologist told him his shoulder pain might be due to something called Polymialgia Rheumatica.  Or it was a side effect of the Simvistatin he had taken for some time. A cardiologist ordered two different kinds of chemical stress tests to make sure Ken's heart could stand surgery. Ken said they were excruciating and while he understood the need for them, he returned to his room feeling he had been tortured.

Through all of this, Ken's shoulder, hand and back pain continued to be extreme and he was given Fentynal through a patch at more than four times the usual dosage and also Oxycontin that were as high as could be safely used.  At this point his hands were so swollen that his knuckles weren't visible.  He could not move his fingers more than the slightest bit.    

After a week in the Milwaukee hosptial, Ken came home to wait until the surgery could be performed. 

Ken's Ordeal Part 2: Pain and Dizziness Begin

If you want to start at the beginning, click the "Ken's Ordeal" link at the bottom of this post or in the sidebar.

In early December, Ken was having several "episodes" a week.  Work was becoming impossible.  He didn't tell me just how bad it was.  However, he looked more and more ill.  He also seemed stiff, and one morning he said, "Every joint in my body is hurting."  He was frequently dizzy and had difficulty concentrating.  He told himself, and me, that he needed a break from the stress of his job, and he looked forward to taking time off to spend with the family at Christmas.  We went to the clinic two times, where he reported that the episodes were increasing in number and intensity, but no answers were forthcoming.  

By Christmas it was obvious to everyone that something was very, very wrong.  Ken's face was a yellow-grey.  He almost passed out several times.  He began to have pain in his back and shoulders--pain which increased to an excruciating point between Christmas and New Years.  We went to urgent care one weekend, and the doctor was unbelievably rude.  He did prescribe Vicodan and suggested Ken follow up with his doctor. 

Episodes were happening multiple times a day, and I tried to convince him to go to the Emergency Room.  He refused (I still don't know why) and told me he would go to the clinic the following week.  But then one night he called me into the bathroom and pointed at the toilet bowl.  Weakly, he asked, "Is that blood?"  Yes, it was blood, and lots of it.  The water was not pink.  It was a deep, dark red.  A stab of fear made me breathless for a moment, and then I began, "Ken, you have to do something....this is really serious...."  "Yes," he said, "I'll go to the doctor tomorrow."

The next morning, New Year's Day, his back pain was extreme.  His shoulders hurt too, and he could barely move his arms.  The bloody urine continued.  Another visit to urgent care with a different doctor led to suspicion of kidney stones, and they did a CT scan.  As we waited for the results, Ken sat with his head down, silent and withdrawn.  His face was lined and dark circles rimmed his eyes.  When I asked him if he was okay, he replied softly, "I hurt." I looked at his hands, which were clasped in his lap.  His right hand looked puffy.  "Your hand is a little swollen," I said.  "Is it painfult?"  "A little."  I touched his hand.  It felt warm.  "Yeah," he said listlessly, "that hurts a little."

The doctor returned and gave us the news.  "You do not have kidney stones.  But we did discover a small tumor on one of your adrenal glands."  We looked at him, and then each other, in surprise.  "A tumor?"  "Yes.  But don't worry.  Most of these tumors are asymptomatic.  Lots of people never even know they have one."  He handed Ken a paper for scheduling a follow-up appointment at the clinic.  "And the reason you have blood in your urine may be because you have been taking too much Warfarin.  Your blood is pretty thin.  Don't take Warfarin until you can follow up with your doc."  He patted Ken's shoulder gently.  "I'm sorry you are in such pain.  I don't know the source of that, so make sure you see your primary doctor soon.  Stop at the desk and they'll get your appointment set." 

Ken never did keep that appoiitment.  The next morning he got up, telling me that his vacation was over and he was going back to work.  He stood at the bathroom sick, preparing to brush his teeth.  I started to tell him that there was no way he was going to work, but then I realized something strange was happening.  He was bent over the sink, shaking almost as though he were having a seizure.  It was terrifying.  After a moment the episode passed and he headed towards the bed, looking like a ghost and weaving from side to side.

"Ken, we are going to the hospital.  Right now.  And I'm not taking 'no' for an answer, and I am not bringing you home.  They will admit you or I will sit there till they do."

Ken's Ordeal Part 1: The Episodes Begin

As I said in my March post, my husband, Ken, has been very ill.  Today he asked me to start writing things down.  Not sure why he wants me too...but here goes.  Maybe if I get this out of the way I can write about something else.

The story actually begins about eight years ago.  I arrived home to find Ken on the phone with a 911 operator, and shortly afterwards a police car and an ambulance arrived.  He was having strange symptoms and was afraid it was a heart attack.  He looked terrible, was gasping for breath, had pain in his chest, was a grey color, and was sweating profusely.  His father had died from a massive heart attack (his fifth) at only age 56, so Ken was understandably frightened.

I jumped in the family car and followed the ambulance, praying all the way, as it headed to Sheboygan Memorial Medical Center.  In the Emergency Room, everything seemed normal.  Ken looked and felt like his usual self and actually reported that he had been feeling fine by the time the ambulance was leaving our house.  All tests were normal, as was a follow-up stress test a couple of weeks later.  We were perplexed, as were the doctors, but we breathed a sigh of relief and went back to life as before.

Ken had another of what he later called his "episodes" about five months later.  This time he did not call for help but sat down and waited to see what would happen.  As before, the symptoms subsided not long after they began.  He did not tell me about this, but he did report it to his doctor.  Again, all tests were normal. 

Ken is a diabetic. As time passed, efforts to monitor and deal with blood sugar levels began to be frustratingly difficult if not impossible. He experienced wild swings in sugar levels, from very high to very low in a short time. He tested his blood sugar multiple times a day and attempted to follow the advice of his endocrinologist but nothing seemed to help. We did not connect the erratic blood sugars with the "episodes" --  and neither did any medical people. 

But as the years went on it became evident that something was not right.  The episodes increased to where they were occurring about once a month or so.  They usually passed harmlessly, it seemed, and they never happened when a medical professional was nearby.  All efforts on our part to explore what might precipitate these bizarre episodes led nowhere.  There seemed no common denominator and no warning signs.  Heart tests were normal, as before.  Lab tests showed nothing. 

Eventually, about a year or so ago, the episodes had increased in number and intensity and were becoming alarming.  He went to a cardiologist who ran a series of tests that were all normal. He went to a pulmonologist who suggested the shortness of breath and other symptoms might be asthma and prescribed something for that.

As the years had passed, his number of prescriptions had slowly but steadily grown as he experienced a number of seemingly unrelated symptoms, including the erratic blood sugar levels, shortness of breath, and high blood pressure. By 2012 he was taking more than 20 prescriptions. 

Life becane more difficult.  People began to notice that something was not right with Ken.  He was tired all the time.  His skin color was greyish.  He was always too warm.  He had unexplainable mood swings.  Once or twice he nearly passed out as an episode occurred.  He began to shuffle as he walked.  Inmates at the prison where he served as chaplain began to express concern.  Longtime friends knew something was wrong.   

No answers were forthcoming from his doctors.  I was alarmed, but felt helpless.  All medical tests showed nothing amiss, but Ken was fading away before my eyes.  He sadly talked about retirement, even though retirement age was several years away.   

We tried, unsuccessfully, to get him admitted somewhere so a team of doctors could expore what might be wrong.  His longtime doctor, someone who had seen Ken through some tough times and whom Ken respected, seemed to think it was all just due to being an aging, overweight, diabetic.  I knew better.  Ken, who tends to be somewhat passive about medical things, became more and more frustrated and hopeless.

And then December arrived.  I'll tell you about December in my next post.